I am crushed.
There is no other way to describe the appointment with my Endocrinologist today, except to say that I will never forget this day for as long as I live.
Remember how I said I had lap-banding and nearly died? Remember how I said that my Obstetrician nearly killed my baby? Remember how I had a whinge about my GP? Well, let me tell you. I don’t think I have ever felt more humiliated and let down by the medical profession than I was today.
I am starting to think that the problem is me. That I have some sort of persecution complex with Doctors and I am somehow suffering from a delusion that I am sick. I really, honestly, am starting to think that I might be a hypochondriac and not know it. I am sitting here, thinking how, with all of these doctors treating me SO badly, the only common denominator is me. I’d have to be crazy to not start to think that *I* am the problem, right?
But I am lucky, because my lovely husband was with me today and can’t believe the way I was treated today either. I did absolutely NOTHING wrong, and I was shot down in flames so fast that I walked out at 2pm and haven’t stopped crying since.
I actually went into the appointment feeling quite optimistic. I mean, the test results were not helpful, but there were a few little weird things that at least warranted investigation. As much as I have a whinge, I am generally an optimist, and in the car on the way there, we talked about the things I needed to remember (I am having trouble remembering things lately) and I was generally optimistic that the doctor was open and looking to actually help me out.
And this, kids, is why optimism can sometimes be a bad thing.
It was the TOTAL OPPOSITE. It was demeaning.
He sat me down and straight away said "Your tests were normal"
"Uh huh". (I expected that because I had received the results and they would be with the test he did). "So, what next?"
"You don’t have Cushing’s, but if you want we can order some 24 hour urines for when you think you’re high", which, with the tone in which he said it, basically implied that he was happy to hand me piss jugs to appease my hypochondria.
I tried not to overreact to this, and was prepared for it. The last time I heard "if you want" it was from the Obstetrician refusing to do growth scans on my baby who hadn’t moved substantially in 13 days.
I said that 24 Hour Urines will show normal for someone who cycles like I do. I am low in the morning and high at night, and therefore it won’t show up (this is true and documented in Endocrinology journals, not just anecdotally).
The second I had finished speaking I knew that I was going to get nowhere. I was also prepared for this.
I said to him that "It’s nothing personal, but I am being proactive and have ordered midnight salivaries from Pathlab, because salivaries are a better way to catch midnight cortisol peaks (again, documented in journals) for me – because my symptoms are worse at night".
At which point he pretty much lost all reasoning and lost his cool. I showed him the Pathlab forms and asked if he would sign for them so I could claim the tests on Medicare and he point blank refused, but said that he’d be willing to look at the results. OK then.
So I also mentioned that I was going to seek a second opinion in either Melbourne or LA. He said he was friends with the one in Melbourne and bascially then implied that even though he wasn’t bothered by me seeking a second opinion, that it would be a waste of time. Of course, I was still being a bit dumb at this point, thinking that I could somehow appeal to him. From this point on he pretty much made it clear that he didn’t want to see me anymore.
I got upset and asked him if there was anything else he can do. I also said that I am the one who has to live with this, not him, and that I am NOT pissing in jugs for a year when there is an easier way. All bets were off at that point. He became very aggressive.
"I think you are fixating on this ONE disease that I don’t think you have."
Now I have never, EVER been fixated on it being this one disease. I mean, in this blog yesterday I even SAID that if its not Cushing’s, then there is something ELSE that is similar, that I am OPEN to the idea that it isn’t, and I have never once suggested otherwise. In fact, I had come to the appointment today, ready to ask him for other tests to rule other, more common conditions out.
I said that my thyroid should probably be checked, plus other levels. He POINT BLANK REFUSED to do any more testing on anything other than Cortisol.
He kept saying "You don’t have Cushing’s". I finally snapped and said "THEN WHAT THE HELL DO I HAVE?"
At this point I burst into tears, and then said to me, sarcastically, "WELL THEN WHAT WOULD *YOU* HAVE ME DO?!"
"I would order midnight salivary tests and an MRI/CT". I told him that I have the cash to pay for an MRI and I was going to do it with or without him.
He then said "I am not imaging you because 20 % of people have tumours. And if we find a 5mm tumour you might think you have Cushing’s".
I snorted a little bit at this point…
"So, what do I have then and why aren’t you prepared to do any tests?"
He sat there for about 5 seconds, quiet, and then finally said "not my problem".
"Look, chances are, we probably won’t know what you have.".
At this point I was SO angry at what I was hearing. I finally lost it and said "NOONE HAS EVER BOTHERED TO TEST ANYTHING! No ANA, No hormones, NOTHING. So how can you POSSIBLY tell me you don’t know what I have when you haven’t even bothered testing anything?"
I then asked if he could suggest a Doctor for me.
He said "go back to your GP, I am writing him a letter."
At which point I said that my GP was useless, he was useless, and I walked out. And paid the $115 bill.
So now, I am in a position where ALL MY FAITH IS GONE.
So not only did he deny I had Cushing’s, he flat out refused to test for any other Endocrine disorders despite a long list of symptoms which include me blacking out with seizures (3 weeks ago) and my heart showing problems again.
And now, I am just defeated.
Yet another doctor. Yet another session where I end up crying because noone is listening to what I am saying. I keep asking Jason if he is sure I am not a hypochondriac – and that I would be ok with it if he said I was. He insists I am not.
I am now in a position where I think my daughter has asthma, and I am too afraid to go see my GP because it all starts again.
What on earth did I do to deserve this?
But despite all of it, I am trying to retain my optimism. I am trying to see if there is a way to ensure that it doesn’t happen to other people… and I am trying to get more actively involved in Participatory Medicine campaigns. I have friends who are going through the same thing as me and you know, enough is enough.
I have money – I can pay for MRIs and tests out of pocket if I need to. Many can’t. Worst case scenario, I can go to Los Angeles and see Dr Friedman. Others can’t. Which gave me an idea to set up some sort of fund or group that helps patients like me to get to see good specialists. I will eventually be able to run this organisation, but also have a clinic. So it crystallises my future a bit more… but you know… right now, I just want it all to be cured.