I haven’t posted here for a couple of weeks. Frankly I’ve been depressed and overwhelmed by trying to sort out my health needs. A few things haven’t gone to plan and rather than shrug it off and figure out a Plan B (C, D, E, F) I’ve just sunk into a morass of self-pity.
This isn’t like me. Usually when it’s something physical, something tangible, something I can do something about, I just get in there and do it and keep doing it and keep fighting until I get what I need/want.
Not this time, this time I just feel ground down. Usually when I’m like this I say “my get up and go, got up and went” this time I think it felt ground into the dirt.
I saw the endocrinologist three weeks ago. I was in and out of the office in around 5 minutes. She asked why I thought my migraines were hormonally related. I explained about the migraine being a little less on the first day of my period and I wanted to explore that further. She responded that she can give a course of treatment that could artificially mimic menopause, so every day of the month would be like the first day of my period.
I pointed out that the improvement on that day while significant enough to be noticed, wasn’t significant enough for a quality of life change, to allow me to work or go out in public for extended periods of time. I asked about other areas that the gynaecologist raised such as my internal temperature regulator (part of the thalamus) being out of whack, or that I receive the same temporary improvement from eating a good meal.
She responded that I had come to see her, that out of the options she offers her patients, this is the only one that she can offer me. So she sent me off for tests to see whether I was healthy enough to start this course of treatment.
As I told JulieD later that day, I’m happy that we have a course of action, but I’m not impressed with the course of action. Again it appears I have a specialist who seems to think that a small improvement in pain management is the end goal. No-one is interested in the cause of the migraine or how to fix it.
Actually that’s wrong. It feels like “you’ve come to see me, out of my bag of tricks, this one is the only one I can offer, so this is the one we are trying”. The amount of value or benefit from the treatment seems to be secondary to the fact she can offer “a” treatment. That’s my impression.
Two weeks later (last Tuesday) I went back to the endocrinologist to get the test results back. Thyroid fine. Bone density fine. Vitamin D low. That’s not surprising considering bright sunlight heightens the migraine! Prior to that I kept out of direct sun a lot anyway as I have fair skin and burn easily.
So then I am given a script for an implant, Zoladex. It’s a once a month implant. I am to return to the care of my GP for the next 4 months and see the endocrinologist again at the end of October. The GP will manage my care between now and then. She asked when I was returning to Bowning. I replied that I would be staying in Melbourne; that I had decided to stay here while going through this drug trial. She became quite waspish and snapped “well you should have told me!” I asked why this was important but I didn’t receive an answer, she just handed my file to the receptionist and informed the receptionist to take down my new address and then she went back into her office.
So all of last week I was ringing around the local area trying to find a new GP. As well as administering this for the next four months, I need one who will obtain my history from my old GP and write the medical certificates for the government welfare agency so I can still get paid some benefits. I’m not even thinking of the review at the end of next month!
I made appointments with six different medical practices in the local area last week. Every single one of them turned me away as a patient because my case was too complicated. No male doctor would touch the implant. Every female doctor recoiled in horror at the implant and refused to consider it’s use on a woman of only 40 years of age. Didn’t I know the potential side-effects? Well no actually I didn’t.
I do now. Stephen and I looked them up over the weekend and studied them all. As well as the usual rash headaches, depression etc. There are some very rare reactions that are quite scary, pituitary tumour, (what another one?) pituitary haemorrhage and psychotic disorder. Emphasis on very rare. But then again, I’ve never been one to go with the crowd ….
The reaction the doctors seem most concerned about is that this drug treatment has a chance on bringing on proper natural menopause. Given my current circumstances and choices throughout life, that one doesn’t bother me as much as it could some people. But I would prefer to go into this with that knowledge beforehand. The fact that the endocrinologist listed none of the potential side effects beyond rash, sweating etc really really irritates me.
So spending an entire day of waiting in doctors receptions and then being told no we wont do that, no we wont take you on as a patient, no we don’t take histories from previous GPs, no we wont prescribe your medications without a brand new letter from a neurologist, no we don’t write reports for the welfare office until you have been a patient here for over a year, I became exceedingly discouraged. I became depressed about everything in my life.
It looked like I may have to go back to Yass and find a little flat there for myself for the next four months so at least I can see my old GP for my medical needs. I can’t move back in with mum – my sister and her kids still need her.
And I’m still wondering why I’m trying to find a doctor to put this implant in, that might bring on menopause or fuck knows what else when the only possible benefit is a slight lessening of the migraine and a slightly faster bounce back. It’s still not fixing anything. It’s still labelling my migraine as intractable. I just don’t know where to go from here …..
On the positive news front, I have an appointment this afternoon with the Northside Clinic. They have a particular focus on providing care for Gay, Lesbian, Bisexual and Trans communities so they are presumably capable of dealing with complicated patients. My appointment is with the leading Doctor so we’ll see what he says about my case this afternoon. Hopefully if his clinic does not take on my case, he can at least give me some constructive suggestions on where to go next.