It’s amazing how humble you get after 6 antibiotics have failed you and you’ve almost drowned in your own lung muck, had your infected throat too painful to swallow, lost all your energy so you’re walking like a 95 year old (and are only 46) and feel your biggest exercise of the day was breathing as the weight falls off what’s left of your skinny self.  I remember the shrink who would always say, ‘one day you’ll look back and laugh’.   And I feel so happy to be off Bactrim, yet I can’t help but be grateful to that demon drug. 

With primary immune deficiency and not enough IgA or IgG to get over a 4 month infection with simple Haemophilus bug the only thing between me and pneumonia was Bactrim.  It was preceded by a rash, blood speckles all over my legs even now I’m two weeks off it, and then brown skin blotches emerged, grey skin patches which look like dirt or bruising, blood blisters, and an outbreak of freckles which has given me new appreciation for brindle horses.  It brought with it increased arthritis, easy bruising, muscle cramping including toes which curled and contorted like something from the Exorcist – that was so painful :-(  A tetchy bowel and muscle soreness.  But, it killed the Haemophilus, a bug that lives up most people’s noses, that they sneeze onto furniture for people like me to catch and breed as they walk around with their wonderful immunity, without a care.

I’m jealous of course.  And I’m struggling with how I can be grateful for a drug which I know hurt me, but saved me.  We are often so angry at side effects but the side effect of being immune deficient and not taking the demon drug would have been more challenging.  Death is a rather irreversible and disappointing side effect.  So for now, I’m grateful for the bad skin and the bruises.

I’m feeling rather alienated though from a society which doesn’t know such choices.  I can’t relate to those who’d whine because they can’t find a handbag to match their shoes, or because they didn’t win the lottery this week, or because they’re having a bad hair day or because the shop ran out of their favorite cakes.

When I first became unresponsive to antibiotics at age 26 all there was for me were dietary interventions, naturopathy, immune boosters.  I’ve been dairy free/gluten free/low salicylate/low sugar for 20 years.  I’ve been on supplements for 27 years.  I’ve been on immune boosters for 10 years.   I know that with inability to respond to most antibiotics and allergies to the others (only managed by steroids) that my next set of choices may be IViG, tranfusions of good blood products for someone with the blood not even mosquitoes will go for.

I want to whine sometimes, to have a tantrum or at least cry.  But I don’t feel I can afford to.  Where would I stop?  And I so need to see others happy.  It is my drug.  Their happiness feeds mine.  So I love and I care and I make myself laugh.  I jump on the trampoline.  I swing on the swing.  I watch the leaves against the sky.  And I find I’m so grateful for everything I have, for love, for kindness, for space, for time.

I’d like to bottle all of that and when I can’t use it any more I’d like to leave it behind for the people who have forgotten the value of such things.   I have watched them like the child at the window of the candy store who doesn’t have a penny to buy anything in that shop.   I wonder if they’ve ever wondered about other lives the way I have watched theirs.

Donna Williams, Dip Ed, BA Hons.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

UPDATE 1:

Off for tests at the dermatologist for all the skin issues.  Seems it may not have been caused by the Bactrim.  Just part of the package of immune disorders and their challenging complications.  Fingers crossed.

UPDATE 2:

It’s possible the recent worrying skin party I broke out in might be a kind of Drug-Induced Pseudolymphoma .  In other words, a (non-cancerous) drug reaction and post drum reaction that messes with the lymph system mimicking lymphoma (a kind of blood cancer).  The two are hard to tell apart but Drug-Induced Pseudolymphoma Syndrome shows itself weeks to months after ending the offending medication with the bruising a side effect of the steroids (Prednisolone). I’m putting my money on this horse.  So if ‘that’s all’ then all I’ve got to do is keep babysitting a dodgy immune system until it improves and trying to stay off medications that screw up the works (whilst saving me from bugs that would screw up even more).  Relatively easy by comparison.  Can I juggle?  Can I what!  I’m off to join the circus.