Saturday, December 18, 2010

Dear Remicade, and other stories

This morning's Remicade excursion began like any other, with a cold, dark and barely-awake drive to visit my second home.  Michelle and Wish, my regular infusion center nurses, perked me up with chatter of new serum biomarkers,  holidays and my veins.  Feeling extraordinarily adventurous today, I opted to give my poor inner elbows a breather in favor of a more fancy-pants IV site: the wrist.  Though I have what is probably an unhealthy comfort with needles, IVs in the back of the hand and wrist have always weirded me out.  It was, to my great amusement, very classy.  Michelle even put a bit of gauze between the needle and the tape so as not to rip out the tube too harshly and invite the typical mess due to the allergic reaction I have to the tape itself.

Wish inevitably asked about my ear, and I refrained from extrapolating my theory of an organism from an alternate universe in favor of the more benign, "this is seemingly a consequence of a suppressed (oppressed?) immune system."  Though it has been a noble fighter in the past, my line of defense is whithering to a sad benched quality -- thank you, Dear Remicade.  In no uncertain terms, this drug has saved me from regular excruciating pain and replaced it with an irritating inability to fight off much of anything that assaults me.  The Colony has by now expanded into my hairline, around the lobe of my ear and is creeping down my neck and onto my face in an inglorious manifest destiny. (Because I have been bragging about this for three months now, I feel that I owe you:)
Gnarly, eh?  Conscious of keeping this blog PG-13 rated,
I sopped up the leaking blood and serum for you.

If it gets to the point where my eyesight is threatened or I fear it will otherwise interfere with graduate school interviews (one acquired, four to go), I may invoke a short-term Prednisone stint in effort to fight the inflammation that not antibiotics, hydrocortizone, athlete's foot cream nor hydrogen peroxide have been able to defeat.  The Derm appointment is only ten days away (my birthday present to myself!), and I count the days (sometimes broken into 8 hour segments... no joke).  We shall see if he supports my Steroid Hypothesis.

Meanwhile; bladder is fully functional, intestines are in agreement with the current diet (even with a few holiday indulgences), night sweats are somewhat controllable or at least don't wake me up as often, and the nasal exoskeleton with its tremendous stores of green mucous continues to subside with the help of Nasal Crom.  Progress, though painstakingly slow, is finally observable.


  1. Welcome to wrist IV land, Raga. Isn't it strangely classy? Re: ear, I had that. I was most displeased. I used usual topical steroids; didn't work. Then this gel cream called Dermatop, which did work. You might investigate. (I was originally prescribed it for these chronic raw "I have no immune system" circles at the corners of my mouth. Turns out it's an equal-opportunity face malady employer.)

  2. ooh! i've had the mouth-corner rawness, too! many thanks for the treatment recommendations. i will bring them up to Dr Derm. erm... if i might ask, what did work in the end?

    also, thank you for the wrist iv inspiration :)

  3. Ahhhh wrist iv's I've had a lot of those lately too blah!

  4. I somehow came across this blog when I was searching for some information to help my 25 year old son who has just been diagnosed with Ulcerative Colitis. I am not sure what the cause of your raw back side of your ear is (It looks very sore too. Poor you.), but I saw the picture and I thought that this perhaps might help. My husband and son have had a raw sore back side of their ear on and off over the years. My husband had soem psoriasis on his head under his hairline and I assumed that the problem behind his ear was the same thing. I was talking with my niece one day about it and she recommended that both my husband and my son use "WEN" shampoo to wash their hair. She said that her Mother (my husband's sister) and she, herself, suffer from this raw and soreness behind their ears and they said that washing their hair with this "WEN" shampoo helped. I had to order this shampoo on-line as it is not available in the stores in Canada, but it was worth it as it has helped. Hope that if you consider ordering it, that it helps you too! Good luck!