being "sick"
You know how you always feel as though the Fates have been too kind to you and then you keep expecting this good luck to come to an end? And yet somehow when it really does screech to a sudden halt it leaves you reeling in shock and wondering if you can handle it. That seems to describe aptly how I feel these days.
I have always thought that I have a good life, you know the usual my parents-love-me-my-sister-and-i-are-great-pals-who-have-enough-$-to-be-comfortable-i-get-good-enough-grades-and-fabulous-friends kind of life. And maybe sometimes I do wonder if I deserve it (being Capricorn seems to mean that I am a devout pessimist) but of course, no complaints for having an easy life.
So of course the long-standing arthralgia which to date has lasted for 6 months and 10 days seem just like a stroke of bad luck. Even though I have been shunted from one doctor to another it doesn’t seem to warrant much worry. I mean, its not like one can’t get a bad sprain which takes months to heal anyway.
So when the “insect-bites” start to proliferate and take over my entire legs I was thinking, oh hey, what bad luck. Such ugly mosquito bites! And then simply shove the matter into the back of my mind. It helped that my sports medicine doctor seems to agree that they were innocent mosquito bites too. But of course, it got more worrying for the vainpot in me when it didn’t go away after 2-3 months. It was disfiguring! You can hardly blame a girl for wanting unblemished legs. It’s bad enough to have fat legs without having weird marks on them too.
When the hair loss came on, I was horrified. In the my-goodness-what-a-young-age-to-drop-hair-i-arent-even-attached-yet kind of way. Yep, purely vanity. And I thought it was probably due to exam stress, even though I never did experience hair loss of such great proportions before.
The arthralgia seems here to stay. Enter good friends rashes and hair loss. And so I casually consulted my teacher after the family medicine end-of-posting-test to see if the rash was something to worry about.
It’s the last thing on my mind to be told it seems to be this thing called erythema nodosum. Of course I was scared. I was a medical student who had vaguely heard of this big term and yet can’t remember if it’s something to worry about or not! And yet having the rash branded seems to mean that something was wrong. Being referred to the rheumatologist only seem to shout out to me that all may not be well.
I still harbour the hope that everything is coincidental.
And now it seems like maybe that’s too much to hope for. I got my test results one week ago and it showed increased levels of ESR, CRP, rheumatoid factor, ANA, pANCA. Now before you jump to conclusions let’s just say that ANA does not equal SLE. At least that’s what my doctor told me. And hooray, SLE usually does not present with increased CRP and patients usually have lymphopenia which I don’t. small comfort eh? Maybe I am grabbing at straws, or maybe she was being kind and trying not to frighten me, but yep I heard enough and I am frightened enough.
I realized it’s very surreal, to look on when patients are told that they have certain diseases and when a role reversal puts you into the hot seat instead. It’s a terrible terrible feeling. No amount of empathy you have for a patient can prepare you for the day when you yourself become the patient. ESPECIALLY if you are a medical student with enough knowledge to recognize the repercussions of certain markers.
A lot of things just seem to flash past my mind. It’s all rather melodrama, even to me it seems very extreme. But suddenly, I just felt as though I am no longer normal. How am I going to pay for everything? Am I going to be able to finish my studies? Am I going to be well enough to take care of my parents? Is this going to be an added financial stress to them? Is it fair for them to pay for my extremely expensive studies when I can’t be sure I can go on to be a doctor? Do I even think I should get married and saddle my husband with a burden? What about my kids? Would I pass this thing to them? Would I have to grow old alone because I would be balding and walking around with ugly legs and would be fat from steroids hence no one would want me? Would I have to wear a wig? What are the treatments that may help my hair loss? Would my friends laugh at my thinning pate? How am I going to face the world with no hair?
Very stupid thought I know. It sounds extremely stupid just writing them down. But these are really the fears that come uppermost to my mind. It’s weird I know, to be so pessimistic when I haven’t been diagnosed yet. These are but the preliminary results what, some may say. But it’s really different being The One with abnormal test results. A doctor I saw at the skin centre who biopsied my rash told me straight in the face: your results doesn’t look too good.
Frankly, I prefer the way he speaks to me, very matter-of-factly and yet not treating me as if I was a fragile porcelain figurine, still joking and poking fun at me as if I was just another normal person. It exacerbates the sense of impending doom when patients get the feeling you are being extra nice and soft-footing around us so that you would be seen as being empathetic and nice. It just adds to the feeling of hopelessness.
My encounter with the rheumatologist started but 3 weeks ago. I have been poked countless times for countless tubes of blood, did 2 urine tests, had weird antibodies-tests done and even what cryoglobulin what-nots done, had biopsy (it was darn painful and horrible) and have been started on steroids. In summary, I feel like a sick person. Yet the ironic thing is that have I not approach my teacher, I could have gone on living my old life happy as a lark, with the occasional fretting about my hair loss and ugly legs. The psychological impact of branding is great. Its makes you blue, roller-coaster between trying to feel brave and strong and wanting to break down and cry for all the uncertainties that now lie ahead. There are times I just feel so angry, then times I feel so guilty for making my family worry and having to fork out so much money for all the tests (for your information I have paid about $1000 just for my 2 visits to the rheumatologist and 1 visit to the skin centre. This is excluding the $800 or so my parents paid for acupuncture, bone-scan etc for my arthralgia). And then I feel so frustrated that I am paying for all the investigations as an A-class patient, since I was referred directly from a doctor. This arrangement stinks big time. And I can’t even downgrade ‘cos my dad’s salary is deemed “too high”. Hello… something is seriously wrong with this arrangement. My family is nowhere near rich. Middle-class families can’t afford to pay $1000 plus a month for medical treatment ok… (I have this sudden urge to write to my MP).
So now I wait. Please don’t feel sad or sorry for me. It would only make me feel worse. But please do pray for me. I hope it’s nothing serious after all. I don’t enjoy the idea of life-long steroids making me fat and alopecia necessitating a wig. *shudder* but of course I don’t think I can be brave all the time so bear with me if I need to whine and wail once in a while.
I wonder how these extraordinary people in the news do it. battling diseases far worst than mine, being brave, getting on with life, calmly accepting their fate, living life just as they have always wanted. I wish I can borrow a little of their spunk.
And please, if you don’t know me well and happen to read this because you are bored, don’t go spread the news as if it were some juicy gossip. I am writing this because I need an outlet. And I need to write it on one of those days when I feel rather calm and collected. So that I can put things into perspective for myself.
