Tag Archive | pills

what you don’t know

  1. RA and fibromyalgia changes a person. living with chronic pain does that to you. it makes me embittered and disillusioned with life and the healthcare system.
  2. Chronic pain means that i carry a pouch of medications in my bag always. Painkillers that go up the spectrum in its strength. Topical painkillers. Anti-emetics in case the painkillers make me nauseated. Anxiety also means i carry with me benzodiazepines (usually clonazepam). Without this pouch when i’m out, i’m practically nothing.
  3. RA is an autoimmune disorder, and it can only be managed (put nicely, put in remission), never cured. And there was nothing i did to induce such a chronic and debilitating disease. Mine started when i was merely 1 years old.
  4. Fibromyalgia is a legitimate illness. It is not a diagnosis placed on a person if a doctor can’t figure out what a patient is going through (i.e. garbage diagnosis). No my pain is not psychosomatic. No my pain is not because i’m doing everything wrongly (posture, ergonomics at school/work, the way i sleep etc), No i’m not lazy, i’m just perpetually exhausted/fatigued despite the amount of sleep/naps i get.
  5. I don’t find excuses because of my illnesses. I try my best even through the pain and the exhaustion. Heck it even takes courage to admit that i am giving something up, or if i have to say no, when i feel my disease involvement is really being tested and exacerbated.
  6. i have chronic depression, and it happened (and still persists) not because i was weak. it started in 2010 because i gave too much of a damn about something- something that i was passionate about, and was good at, that pride took over. at that point my eating disorder was in full swing for a year already, and it didn’t help with the stress and pressure i faced.
  7. i fight. and i don’t stop fighting. i fought to finishing nursing school, and fought to finish it well. i fought at and for work as a nurse. i gave up my career as a nurse because undue pressure and sanctions were placed on me just to validate my license. it triggered me everytime i had to go down to board’s office to submit the letter from my psychiatrist.
  8. the people who are in the caring profession are the very people who perpetuate the stigma of mental illnesses. this was something i could never understand.
  9. i’ve lived in hospitals- medical and psychiatric- for a total of nearly 3 years. it takes courage to go in, to admit that i need help. it is not attention-seeking behaviour. and to be honest, all these time in hospitals are the ones that kept me alive.
  10. and yes, as much as it seems the opposite, i am fighting to live. i subjected myself to 63 sessions of electroconvulsive therapy (ECT- in layman terms, electric currents that runs through the head), because i struggle with chronic suicidality. if i seem forgetful, this is why. amnesia is the primary side effect of ECTs.
  11. i’ve been labelled as the “worst case” my psychiatrist has seen, “the most difficult patient” my psychiatrist has had. 70 over sessions with my psychologist yielded almost no effect on my mental health. so pardon me if i think i am a hopeless case.
  12. people have asked it, and implore you not to ask it nor even think about it, why i am “still like that”. do you actually think any sane person (yes i am very much sane) would want any of this bullshit? if i can have it my way, i want nothing of this.
  13. i am always fighting to manage my conditions, and that includes working towards recovery. sometimes i am able to muster the strength to stay relatively well (usually from extrinsic motivations). but it doesn’t mean that i’ve done it before, that it cann be replicated. circumstances are always different. and not reaching recovery doesn’t mean i am weak. it means i’m still fighting. whether it is me managing my symptoms because that seems to be more important at that time, or whether it is me fighting my demons because it feels like i’m well enough to work towards recovery.
  14. i am always seeing doctors, and again this is not attention-seeking. i see a rheumatologist, a pain specialist, a psychiatrist and a psychotherapist (who’s also a psychiatrist), with the occasional visit to a gastroenterologist, a nephrologist, a neurologist etc. i am for the record, not the healthiest person around, and no i did nothing to deserve anything that warrants these visits.

  15. when i cancel on you, it does not mean i’m not keeping my end of my promise. it usually means i’m exhausted through and through, either from the disease process of RA, fibro, or even depression. or it means my mood has plunged, and/or i am crippled with anxiety that i can’t leave the house.
  16. when you see me smiling and laughing, talking (sometimes loudly), walking with normal strides with my head held up, 99% of the time it is a facade you see. this facade is quite true to my old self. and it takes immense energy to keep the facade up.
  17. when you see me turn a little quieter, becoming more reserved and isolated, head down, and walking a little slower, it means the energy that’s keeping up my facade has run out. it means you are seeing a more genuine side of me, and honestly, i’m not fun to be with once this occurs. it can dampen the spirits of everyone, and i don’t mean to do that.
  18. i am easily triggered. when i see images or hear about things like suicide, means to kill oneself (like ropes, pills etc), and all, i immediately withdraw. it can mean that self-harm will come later, but that’s just the way i am. i am extremely sensitive.
  19. when i bare my arms to you, it means i trust you enough not to judge me. i am not proud of my scars. but i don’t want to tie it so much to shame as well.
  20. it’ll be difficult to accept me because of the way i butcher myself. but i always hope people can understand that self-harm is my way of coping, of self-regulating. it’s just like how people turn to alcohol, drugs and ciggs. and if you have questions, i really don’t mind being asked, as long as it is done tastefully.

it’s difficult for people, and even my doctors, to see how pain is inevitably intertwined with depression. everyday is a battle for me. i start off my day downing anti-depressants and a cocktail of pain medications. it’s a judgement call to make, for how much pain medications i need to start my day. a painful day makes for a very moody and/or angsty day. on the other hand, there is no happy pill. when i’m anxious, i pop a clonazepam, but it doesn’t make it go away totally. sadness, despair, distress and worry usually accompany anxiety. and if i can, i lie down, hide under a blanket, an try to sleep it off. if i’m out, i try with all my might to get home to do precisely that- hide and sleep. the worst is when my mind decides that my life is not worth living. there is no anti-suicidality pill. there is only self-injury and ECTs. i don’t hurt myself for the sake of it. ironically i hurt myself to stave off the suicidality (at least when i’m not inpatient), and it does help. it’s difficult to believe it, but it really does help. it helps me to at least live till tomorrow. and sometimes that’s all that is important right?

everyday is still a day of self-discovery, of learning who i am and what i am. everyday is a chance to be stronger, more resilient, more accepting, and a chance to desire living instead of dying.

my friend from my community described me as a fighter, as do many others, in different ways and words. i constantly deny them, because depression tells me everything otherwise. but for the past few days, i’ve thought about it. if i hadn’t fought, even as a child with undiagnosed juvenile RA, would i be here? if i hadn’t fought through the pain even as it progressed into adulthood, and then also fighting with fibro, would i be here? if i hadn’t fought with depression and bulimia, would i even still exist? it answers it all.

lastly, without my faith in God, i am nothing. He was the one who carried me through all these years, giving me the strength and courage when there was none to go on. He carried my crosses (which are my burdens and struggles) with me, and never left me even when i turned the other cheek. what can i say? God is good. God is Love!!!

The Lord will fight for you, and you have only to be still. -Exodus 14:14

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Pills and more pills

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I’ve put this off for too long- actually sorting through my medications, counting the pills i have in my stockpile, creating a list for it, and putting it neatly into a pretty shoebox. I’ve packed my stash several times, but it was always shabby and just dumped into a box which is twice (or more) as large as the Massimo Dutti shoebox they are in now. But they were just dismal and in such a mess as well as a bother. For the longest time i know.

And now, it’s all neat and pretty, with an inventory to go along with it, and a stockpile that’s getting smaller in size. Yay!!! I used card paper, cut them and then labelled them by sticking on tabs, and used them to divide my medications by alphabetical order. I initially wanted to divide them by indications (like for RA, sleep etc), but having an array of indications, it seemed easier to put them alphabetically. Your call!!!

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I have about 21 different drugs on my inventory. Some as drugs as few in number as 6, like prochlorperazine(Stemetil). Some drugs as many in number as 284 for sulfasalazine(SSZ), and 229 for prednisolone. My stockpile of HCQ has dramatically reduced to as little as 34, which means i can fill HCQ prescriptions, like finally, after such a looooooong time not doing so. Now it’s time to reduce the stockpile i have for SSZ, and probably never ever fill prednisolone prescriptions till i finish 229 pills of it. (I do realise that my reluctance with taking steroids might mean never ever finishing them by expiration.)

Rheumy appointment (yaaaaaaaaaaaaaaaaaaaaaay!!!) next Wednesday, and i hope SSZ doesn’t get discontinued for me.

I’ve been paying quite a bit for a certain 2 branded drugs, and they are very expensive especially when i take these drugs everyday. 4 pills a day for one, and 3 pills a day for another. They are very taxing on the pocket, no kidding. It stresses me that they can actually cost so much a month, especially when i start working again and pay for everything myself once more. With this realisation, i am so very GRATEFUL for paying subsidized rates for my RA drugs. With branded drugs and its exorbitant prices, i am more prudent with the stash i have at home, and i make sure that i don’t buy more than what i need (opposite to what i used to do with generic RA drugs). Imagine having a hundreds of dollars worth of stockpile, if i do stockpile them like HCQ and SSZ. *zzZzZZzzzZz*

I read in the papers today, about Enbrel(etanercept) and its patent expiring some time in October 2012. That’s about a year from now. I was… Glad actually! Because when drug patents expire, what it means for patients is that there is another option for a similar drug at a lower price. It can be good news if the branded drug has been immensely expensive. But it dawned upon me that patent expiration does NOT mean that a generic version is available. Moreover such biologic agents can be very difficult to produce. The slight hope that i had for another chance at Enbrel and a chance for a remission?

KAPUT.

In my short-lived happiness knowing that Enbrel patent expires next October, i quickly searched and found out the expiration dates of the older biologic agents, and was disappointed all the same. (I’ve tried my best to obtain accurate information, but hey may not be accurate, and if accurate at time of posting, the expiration dates may also be extended in future.) Humira’s(adalimumab) patent expires in 2016. Remicade’s(infliximab) patent expires in 2018. Orencia’s(abatacept) patent expires in 2019.

That’s a long time. I don’t know how long it’ll take for generic versions to be produced, if there are going to be any attempts to do so. Even if generic versions are produced, i will hazard a guess that prices will not be greatly reduced. They will still run in the thousands (especially for Remicade), or at best about a thousand dollars (Enbrel). Still very unaffordable for me, and not worth the moolah for a remission. I guess i shall STOP thinking about biologic agents and a chance of remission.

And live and think reality.

I had my follow-up with my shrink last week (which reminds me i’m seeing him again later in the day), and what he said confirmed my all-time suspicions. My all-time suspicion that some of us healthcare professionals are actually slapping our own mouths as we tell our patients to take with diligence their medications. It happens that he does not like taking pills, and he admitted that while having a bad bout of gastritis and seeing patients. Oh bother. I actually chuckled when he said it, and if i had my bring-along stash of meds, i’d offer him an antacid and an omeprazole pill. Being a patient and not a nurse, i then challenged him with issues of medication compliance. 🙂 Some thing one can do to put the healthcare professional into perspective about our difficulties as patients.

Ok. No more talk of drugs. I’ll end it here for this post, and i’ll talk more if i have anymore new ‘revelations’.

p.s. I am going to make a card listing up-to-date information about the drugs i take and my drug allergy. I’m contemplating adding a list of drugs which i will adamantly refuse as well. Makes things so much easier when i have to see doctors, or any nurse/pharmacist/dietician for that matter. Will put it up here if i do!!! I’m positive it’ll make things easier!!!

Exacerbation

This is just great.

After writing a post about RA lamenting about the niggly pains here and there, it’s hit me hard.

It was like good ‘WHAM‘ in my face, and here it goes all over again. Much worse than it already was. Wondering what I should do, and deliberating if I should just take that bloody 5mg of prednisolone.

*sigh*

I guess I have already developed a tolerance for Arcoxia? Anarex as well. The DMARDs are not doing much, save for the MTX. I just wished I could take up to 25mg, which would be optimal. But my liver tends to throw tantrums when taxed too much. SSZ and HCQ are really just sugar pills still.

😦

Already taking as many as 23 pills a day, or 29 pills on MTX day. Don’t know how long my liver can hold out.

Totally do not need RA taunting me now.