Well I spent the better part of last week in Canberra with Miss A being ferried back and forth to Canberra Hospital for a cannula in the arm and regular DHE infusions. I’ve not actually been a hospital patient since birth, so I learned many things during this:
- I hate cannulas – especially when they take over an hour and a number of attempts to actually get one successfully inserted. They also hurt when in the crook of your arm for four days straight.
- I hate bad supervisors and I will say something about it. The nurse attempting to insert my cannula tried long and hard, obviously trying every trick she knew how to get it into my difficult veins before asking her supervisor for advice or a more senior nurse to take over the case. The supervisor barely looked up from the PC said she hasn’t made the requisite number of jabs and to do it again. I raised my voice and from across the room and started listing all the ways a decent supervisor would have handled that query until he left the room. A senior nurse came over, gave her some great advice and eventually managed to insert the cannula.
- Short male doctors who walk in wearing motorcycle riding leathers do not have a sense of humour about suggesting they ride Vespa when they actually ride a Triumph Bonneville. Frankly he shouldn’t have asked us to guess ….
- I am highly allergic to codeine not just merely allergic. The premed, designed to reduce the nausea associated with the DHE, actually made me nauseous, hot, bothered and jittery.
- I am very lucky – I merely felt nauseous for an hour or so after each infusion and then the nausea went away on its own without any premed. Most patients apparently vomited while taking these infusions.
- We wont mention the diarrhea – but I doubt Miss A has ever had a cleaner bathroom. I even used a toothbrush to scrub parts of it I was so embarrassed by how bad an attack I had.
- I am not a good hospital patient – when the doctor turned my beeper off that announce the end of my treatment then forgot to inform the nursing staff, I gave him five minutes and then asked what our dinner plans were. He looked confused and then informed a nurse I was ready to be unhooked and checked over. Miss A looked equal parts horrified and delighted at me so I figured I had overstepped bounds there.
- I do not deserve my friends. I was unnerved, uncomfortable, irritable and at times frightened by this experience and Miss A sat unperturbed through the whole thing, keeping me distracted by telling me horror stories of all the times she had been in hospital and all the gruesome procedures she had undergone – she certainly kept me distracted for the better part of the time!
The good news is that at the end of it I think something may have worked! It hasn’t worked as advertised as I still have migraines, but it has certainly done something. I don’t seem to get into the homicidal rages when the migraines are triggered. My head still pounds abominably but the sharp overwhelming pain that drowns out all thought is gone. Its like the edge has been taken off the pain.
It’s not the way it was advertised but I think we may have broken the trigger cycle. The migraines are still there, they are still be being triggered, but somehow I can deal with them now. So now we figure out how long this will last, if it improves over time, if it fades over time, how often I will need to go through that series of infusions (most patients have them regularly from monthly to six-monthly) so we will see how it settles over the next week or so.
I see the specialist again on 31 August for more news. I’ve been experimenting with going out in public to see how these changes are working. I went out to lunch with a friend while having the infusions and that worked OK. I was still quite ranty and not quite myself, but I could at least string sentences together. So this weekend at the Craft Fair will be the next test – a public venue with a couple of friends. The head will pound, but hopefully mentally and emotionally I should be able to hold it together for a couple of hours.