September 17, 2014
Dr C, my anaesthetist surprised me today. i saw him asking him to write a letter to my rheumy as i was due to see her soon, as he is now primarily co-managing my pain. at the same time i had 2 painful trigger points just right at that point with my shoulders flaring. we talked and talked about my treatments, and he wandered into nerve blocks.
nerve blocks? i’ve always had trigger point injections with him. yeah, he said nerve blocks because of my complaints of high levels of pain in my shoulders and upper back. i did emphasize that my shoulder joints are the ones flaring though, and then the upper back painful from the trigger points. so he decided to try to block the suprascapular nerve with bupivacaine and triamcinolone.
he did it blind, meaning he did it without ultrasound guidance or any imaging whatsoever. he was that experienced. he had to use a spinal needle. and for those who don’t know, a spinal needle is a long ass needle that frightens most people. sometimes it intimidates me too. especially when doctors use it on my patient’s spines. then again, it had to be used because the nerve was that far in. the length was needed.
yup. oh well, but it went fine, prolly because there was local anaesthetic. Dr C kept asking me if i was fine when he was doing it bilaterally. He kept telling me that i could hold his nurse’s hand if i had to. but HONESTLY, it was ok. for me.
Dr C said my pain threshold was unusually high. i wanted to tell him that is someone with RA didn’t have a high threshold, how would the person live? now what more with fibromyalgia now? but i didn’t say it. he was was glad to help. too kind to waive a lot of charges because i was my boss’ staff.
my arms were rather weak after lunch. i couldn’t lift them up from the upper elbows, and it was super weird. like some odd kinda paralysis. but it was not unexpected. Dr C had warned me about it. the worst part was that i had to do a lot of lifting right after lunch. it wasn’t impossible, but it was painful, ironically. at the joint capsule.
nerve blocks. in my shoulders. i actually “YAY”ed in front of Dr C when he suggested it. i hope it works. and i hope he writes a useful letter for my rheumy. hopefully the ‘paralysis’ will be totally gone when i wake up later.
September 14, 2014
i am only human. i think.
the past 2 months or so, especially, saw me very temperamental. did you see my posts when i exploded and i cried, when i was sarcastic and when i wept? did you read the resentment and bitterness? did you see those imaginary “why???”s that peppered my posts?
i cannot explain why i was so. i won’t find excuses. maybe i was being a whiny bitch. maybe i can’t count my blessings. maybe i don’t know better huh.
i’ll tell you though, in your face, what i was and am.
I AM SCARED AND FRIGHTENED.
there. i said it. i am scared of uncertainty. i’m scared of change. i’m scared when i lack answers. i’m terrified when i have to live with that until we figure something out 3-6 months later. what’s more frightening, indefinitely. pain is indefinite in my life and it is intolerable for me when i hear news when i have to bear with more when i just settled with less. i am afraid of uncertainties with side effects when they come slamming in my face. i’m scared of new problems no doubt. who wouldn’t? especially when you’re symptomatic?
i am scared and frightened, and i felt like i was patronised. that’s all. and with that comes anger and rage and threats to walk away. threats to give up and stop.
and till today i am still feeling it. you won’t see that i’m scared and frightened. all you would see is a girl enraged who’d boom about everything she lost in the last months and if you’re unfortunate, the last many years. it takes time to peel open the layers to see that vulnerable side of me, which some people either don’t get to see, or refuse to see when given the chance to. only few readily see that side of me.
so yeah. i will be hostile to the next doctor (i know) who shuts me first before i shut them up. because chronic illness patients deserve to be treated like any other patient, or human at the very least.
oh and lastly, if my scars aren’t good enough for them, or if they think they’re ghastly, then sorry but not sorry, you my doctor are not good enough for me then. go eat cake.
September 14, 2014
September 8-14 2014 is Invisible Illness Week.
1. The illness I live with is: Rheumatoid arthritis, Fibromyalgia, Depression, Bulimia Nervosa
2. I was diagnosed with it in the year: 2007, 2014 and 2010 respectively.
3. But I had symptoms since: I’ve had RA my whole life before i was diagnosed at 17. However 15 years old was when it really took a turn for the worse till i can’t wear my tops/shirts. Fibromyalgia was rather insidious and i might have had it for about 4 years before diagnosis this year. For depression and bulimia, i had it for a year before i finally got diagnosed and treated in 2010.
4. The biggest adjustment I’ve had to make is: Giving up my life’s passion of dancing(ballet) and also giving and taking in terms of my life’s calling of being a nurse. Also, acepting that although i am young, there are certain things that i can’t do or have to do (like physical limitations, also other things like the need to take medications and monitor bloods), and that people will not understand why so. Sometimes i give up explaining anymore.
5. Most people assume: I’m so very normal and am capable of everything and anything just like anyone else? And then when i can’t do something (due to my invisible illness), i am accused of finding excuses.
6. The hardest part about mornings are: Getting out of bed with morning stiffness, pain, being totally unrested and lethargic. I need 3 to 5 alarms to get out of bed to even wake myself up before i can crawl out of bed. The motivation to do so is barely there too.
7. My favorite medical TV show is: If fictional, Scrubs and Grey’s Anatomy. If not, none at all.
8. A gadget I couldn’t live without is: Usually my just my handphone. But i’d love to have my iPod or iPad with me for the music too.
9. The hardest part about nights are: Falling asleep, ruminations and flares. I have chronic insomnia and i am very resistant to even benzodiazepines. I am now on flurazepam and i add on Lyrica 150mg to knock me out, but the sleep is shallow and i wake up many times. Flares in my shoulders are too common at night, and they keep me up as well because they feel like stabbings in the shoulders.
10. Each day I take 15-20 pills & vitamins (no comments, please): I hardly take vitamins and supplements actually. Only lately have i been trying to tale 1 tablet of Vitamin B12 1000mcg for the boost of energy. As for Vitamin D, i have not started on that yet. The rest are all RA, pain, depression, anxiolytics, benzodiazepine, pro-kinetic medications.
11. Regarding alternative treatments I: Don’t really try them at all. Maybe chinese medicine like acupuncture in future, but not now.
12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t be able to choose. I think i’d be as disgruntled as i am now, if i had a visible illness. I’ll never wish either on anybody, so yeah.
13. Regarding working and career: One of the most regretful things in my life was giving up dancing; i was wanting to go pre-pro but progression of my RA in my very late adolescence just killed that thought. I was blessed enough to have a calling to be a nurse. But as i studied and became a nurse, it ain’t easy! Everything i do as a nurse goes against what i should be doing as a RA patient. And God bless me when my patient codes, or when i need to do difficult physical transfers. Walking, standing and running about, playing around with syringes and vacuumed vials, all the concentration and memory needed makes every damned day a challenge. But i love my job nevertheless.
14. People would be surprised to know: That i don’t take medical leave from work for RA reasons. Never. Even in the midst of major flares. I just “suck it up”, as people like to say, take as much pain pills as i can, and go for it.
15. The hardest thing to accept about my new reality has been: Nothing has really been new in my reality, except for my co-morbidities. But i guess it would have to be getting over the grieving process (yes i’m not even done with that) and learning to cope with the worst days when all my problems whack at me all at once (especially when the RA pulls depression in).
16. Something I never thought I could do with my illness that I did was: Travel alone, with luggage as heavy as 30kg. In a cold place like London. I was so proud of myself for getting through my whole trip by myself. It was a kind of new-found freedom.
17. The commercials about my illness: Nah there aren’t any in Singapore.
18. Something I really miss doing since I was diagnosed is: Dancing. One would find me marking steps quite often, with my hands, when i’m listening to classical ballets.
19. It was really hard to have to give up: Ballet. I waited till 2010; until i was 20. I stopped teaching, i pulled out of my Grade 8 exam. It’s the same year i got diagnosed with depression and bulimia.
20. A new hobby I have taken up since my diagnosis is: Nothing, sadly. I draw a bit here and there. Write in bits and pieces. But nothing much.
21. If I could have one day of feeling normal again I would: Go for ballet class, with pointework, and then perhaps a repertoire class. Oh that’d be a lovely dream.
22. My illness has taught me: To be patient with myself, and that it’s ok not to be ok. That it is more likely people won’t empathise, but that i don’t need their validation. Empowerment is the secret, although it is difficult when the going gets tough. And it has also definitely taught me never to settle, unless it is the absolute best that has been done for my condition. Keep seeking, stay hungry.
23. Want to know a secret? One thing people say that gets under my skin is: About RA, it’s always “yeah i get that too, but a NSAID does the trick” or “aren’t you too young to get that???” I will roll my eyes. Now with fibromyalgia, it’s when i hear “psychosomatic” that i really get mad at people. With depression, i don’t like it when people use the word loosely “oh i’m (so) depressed” etc. APA and DSM came up with the criteria came up with Major Depressive Disorder for a reason and although admittedly i have had it for too long (yup 4 years is indeed too long) and i am not a poster girl, it irks me. Bulimia? When people talk about it like it is a trend that someone catches up with. It’s not funny.
24. But I love it when people: Are understanding and kind, non-judgemental, and love me for who i am anyway.
25. My favorite motto, scripture, quote that gets me through tough times is:
No, that trauma you faced was not easy;
And God wept that it hurt you so.
But it was allowed to shape your heart
So that into His likeness you’d grow.
26. When someone is diagnosed I’d like to tell them: That i understand, although never fully so. But i’ll always be there, lending a listening ear, giving them a hug, and i’ll be their friend/sister, even when nobody cares/wants to.
27. Something that has surprised me about living with an illness is: It has shaped and moulded me into a much better nurse than i can ever imagine. Oh and yes, and that i am stronger than i think i am.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me flowers? (Friends around me know i love flowers.) I’m sorry, i can’t really remember. The ECT amnesia erased a lot of precious memories :(
29. I’m involved with Invisible Illness Week because: More people need to know about invisible illnesses because they are, INVISIBLE. Precisely!
30. The fact that you read this list makes me feel: Heartened. Thank you for taking the time to read this. I love you! :D
September 7, 2014
i checked, and i found out that i am sorely deficient in Vitamin D. my stores are only a pathetic 8.24 ng/L when >30 ng/L would be sufficient. and you know, Vitamin D is important in that it plays a role in inflammation- the cytokines, the interleukins etc… so perhaps it might be why i am in a good deal of pain? gah i don’t know what to do with it.
i also only just found out i have mild scoliosis? it must be adult-onset, because the last i had back x-rays in 2009, there were no signs. right convexity in the mid-thoracic spine and compensatory left convexity in the thoraco-lumbar spine. strange. has it been causing the back pain? or is it really fibromyalgia pain? i don’t know what to do with this either.
my shoulders hurt again. stabbing pain. how do i sleep tonight.
September 5, 2014
it has been a rather frequent affair- my shoulders hurt so much that by bedtime, the pain is so excruciating there is an intense urge to stab my joint with a knife. for years i’ve been thinking like that when i have such flares. somehow the pain of being stabbed seems less painful. the shoulders flare such that i can’t move. yet even being still, it feels like the joints have been pierced by something.
tenosynovitis? i honestly have no clue.
i, last night, have decided that i’ll see my rheumy once more. give her one last chance. and i’ll stick by my case that:
i don’t need to convince you with physical presentations of flares when i see you. i see you 4 days out of 365 days and i cannot ‘please’ you each time. if i verbally report it to you, take it and do something. you’ve never done anything for my shoulders despite how debilitating it can be. my sacroiliac joints too. how many years has it been??? and if you insist i am in remission, kindly explain to me why i still have flares, fatigue and morning stiffness. what is my DAS28 score? you took off ALL my meds and now i cannot take celecoxib because of lithium. i am essentially on NOTHING for RA, and you say a lot of my pain is psychosomatic??? please remember my RA came first long before depression, and i’ve seen you for a couple of years before that. i’m not sorry anymore that i’m a ‘failure’ as a RA patient. you need to understand my pain. and i take offense when you wrote in your referral that i self-medicated with prednisolone. WHY DO YOU THINK I DID THAT???
ok i’ll stop here. i could go on forever. but i see her on the 30th. we’ll see how it goes. my shoulders still hurt. now my wrist hurts too. i have ZERO anti-inflammatories.
September 4, 2014
in ballpoint pen, near my wrist scars
i had a terrible day at work yesterday. it was so bad, i was on the verge of quitting. it involved an overseas patient, and i was on the frontline bearing the brunt of his mistakes. he later pretended as though there was no mistake on his part. i was fuming. but what could i do?
this morning, as usual, i tossed and turned in my bed since 4am. thought about work, my aches and pains, life, everything. then i thought about Keele. my interview with them was more than 2 weeks ago. surely they have some answers?
i flipped my phone over to check the time and saw an unread email. it was from Keele!!! they’re offering me a place!!!
KEELE. A PLACE. NURSING DEGREE WITH HONOURS. BRITAIN.
i cannot contain my excitement!!! i almost sobbed with joy. i shook my mum up to tell her, then went back to bed to calm myself down and wait for my alarms.
God always provides.
August 31, 2014
“Do you even celebrate anything these days?”
Dr S asked me, as if to challenge me. I think he felt like I was a body of negativity. And when I dared him regarding my diagnosis of depression…
“Hmm yeah my birthday. But I hated that. Then hmm. Oh yes. Those 300 days.”
“300 days is a feat worth celebrating. So how? How did you celebrate it?
“Erm… I used my ballpoint pen to draw the numbers 300 with flowers, took some stupid photos on the bus as evidence. Then yeah.”
“There you go. You see, Stephanie. For you there’s nothing to be happy about. There’s nothing to celebrate.”
I looked at him and shrugged my shoulders. Every ‘celebration’ is a struggle for me. Honestly.