I have thought about this for a few days now, trying to put a little sense into some news I received recently. News which should have made me feel ecstatic. I should be leaping from tree to tree, swinging like a joyous ape, thumping tables and screeching in gay abandon.
Unfortunately, I am doing none of those things even though good sense and fair judgement would beg to differ.
Last Thursday, I went for my yearly check up at the rheumatology clinic. Not because I have rheumatism or arthritis or anything like that -12 years ago, I was diagnosed with SLE, or Systemic lupus erythematosus. It had taken 2 doctors 7 years to come up with that since my symptoms were somewhat bewildering and SLE appeared to fit the bill. At the age of 38, I was facing a life time of nasty drugs and eventual death. The drugs, initially helped and I felt better but with time, I felt worse, yet I was told, repeatedly, if I did not take them, I might was well toss myself in front of a bus, my life would not be worth a day’s purchase. So, like the obedient, rather blind ape that I am, I continued to take them. Until I had a rather unpleasent attack of shingles. My immune system had hit such a monumental low, I was now fighting off dormant chickenpox. While I was so ill, I decided to stop taking the drugs.
Funnily enough, I didn’t die.
I didn’t get worse either.
I put myself on a rather strict regime of ayurvedic therapies, including turmeric and ginger, I started taking fish oil and made friends with vegetables which, unless they are raw and in small quantities, I have despised since childhood, I also started eating food I had grown up with, as opposed to this nonsense Western kitchen. Wonder of wonders, I started getting better.
My doctor thought I was mad. The other doctor actually thought I might need a psychiatrist, no one stops SLE meds, ever. I must want to die.
Eventually, the two learned heads let me be. I promised if my symptoms return, I will come and see them. Really, promise. I had one or two flare ups which went away with flu’ meds. I had some aches and pains, over-the-counter drugs took care of that. I continued on my way. I lived cautiously, doing my best not to provoke my body in having a chimp out, no freaky stuff, no alcohol, lots of zen.
Until last Thursday. I went for my now yearly appointment – it had been every 3 months, then every 6 and finally down to once a year. There was a new doctor there – the old one had been booted apparently, he was off making money somewhere else.
The new fellow looked at me and the usual questions poured out of his mouth – how are you, any problems, pain, etc..I said no. He asked me if I had any problems with SLE lately. I said no. He said he found that a little odd.
He asked me if I had ever been re-tested for SLE. I said, as far as I know, after the diagnosis 12 years ago, there had been no second-look. It is hard for a doctor to appear shocked but for a moment he displayed a human emotion.
He said he doubted the initial diagnosis was accurate. In fact, he doubted everything he read in my file. He didn’t understand why I had been prescribed such powerful drugs on, at best in his opinion, an inconclusive diagnosis. He wanted to know why the doctors had not followed the latest SLE protocol and would I be interested in being re-tested?
I told him every time I asked to be re-tested I had been told I should stop reading Doctor Google so loudly and listen to my betters because Doctors Know Best. So I stopped asking even though I didn’t need Doctor Google to tell me SLE never just disappears. Remission sure, but vanish it does not. Mine did just that.
He said in all probability I had rheumatic fever. It is very likely I had picked up something tropical somewhere that no one had bothered to test for. For all he knew, the flair ups could even have been malarial. He said he would retest me and promised to give me the results – because in his learned opinion, the initial diagnosis was wrong and he would eat his shoes if he is wrong. The last few blood tests, of which I was never given the results, pointed to no SLE activity, in fact the initial blood test had been inconclusive at best. He figured the doctors had given me a diagnosis so they could find something to work on – and since the medication appeared to work, then their diagnosis must have been right, even if the science they had used to make it was actually wrong.
He said he was sorry the medication had given me liver and digestive problems, but there was nothing he could do about that. I should consider AYURVEDA or HOMEOPATHY. There are some great therapies there that would help.
He should be happy I am not a violent ape.
I walked out of that office with some vague promise of “I will tell you as soon as I know,” not knowing if I should laugh or cry. It was as if the last 19 years of my life had been for naught an accumulation of disappointments, lost opportunities and frequent tears all for nothing. I could have taken that job that would have required much international travel, I could have been so much more than just some admin. I didn’t have to break off my trip to Indonesia because I ran out of pills, I could have joined a road trip through Africa. I didn’t because I was scared. I was worried I might burden others if I had a flair up at an inconvenient time. I didn’t want to frighten anyone.
I had given up so much because 2 doctors had sentenced me to death and I was trying my best to live.. I would not provoke death in any way because I owe it to others to stay alive as long as I can.
Of course, I still owe it to others. That has not changed, I won’t become reckless over night because 2 doctors 12 years ago decided to make their lives easy and use me as a guinea pig for drugs. But a shamefaced apology from a man in a white coat whom I don’t know from Adam does not make me feel any better.
I feel cheated and I feel angry. I feel like God has had his monumental joke at my expense. I feel like he has taken my life and twiddled it between his thumbs and thought, “hmmm, what shall I do to this little monkey today….” People will say “God has a plan for all of us.” Well, I had plans too and I think at this point, His suck. I fail to see the funny side of this and if anyone can enlighten me, I am all ears.
I spoke to a friend and she said the same thing – just forget it all and move on.
I did that 12 years ago. I moved on. I lived with it, I did what I could to ensure the beast would sleep.
So please correct me if I am wrong.
May I please be angy today? I want to be furious, I want to be mad as hell, I would hit things with a big stick if I could. I am tired of being calm and composed, of nodding in agreement and being gravely interested. I want the world to know I am angry today.
I have lost more than 12 years of my life. I lost who I should have been and no one can give that back to me, except me, and at this point, I don’t know how to start again. Any ideas?