A blog about TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome), living life with an incurable illness and learning to live well.
Wednesday, September 7, 2011
The Boob Update
So, I saw the breast surgeon who was one of the wankiest doctors I've seen. I rated him as #3 in the rude stakes. Unable to operate his own ultrasound machine, he also yelled at me for covering up before he thought necessary and then spent the last 10 minutes of our 30 minute appointment online googling for a drug contraindication I told him about when he suggested I take evening primrose oil for the breast pain
He was also 1 hour and 20 minutes late to the appointment with no apologies.
Evening Primrose Oil is somewhat effective in combating cyclical breast pain, however it has reportedly had no effect in non-cyclical breast pain. It is also contraindicated with one of the drugs I take.
And for this privilege, he charged us $175. I wish there was a rebuttal process for when you see a doctor who provides you with nothing and verbally assaults you.
Basically he said that there was nothing pathological in the boob (which we knew from the ultrasound the previous week) and said that I was a rare oddity in that I only have 2 milk ducts in my left boob.
When I spoke with my MIL about this it occurred to me that my daughter never settled on the right boob and preferred the left, probably because it had a slower flow and the right would have been so different in milk flow and quantity.
So, I really do feel like a superwoman having breastfed, mostly 1 sided, for 21 months from a boob with only 2 milk ducts.
What we learned, other than you should always listen to that predictive voice inside, is that there is nothing structurally wrong with the breast, no filled ducts, no lump, bumps or bruises, nothing wrong at all. Just pain. His sage advice was: Suck it up and deal.
Yes, because you're just a silly, silly woman complaining about some pain. Suck it up and deal. Can you imagine a doctor stating that to a president or prime minister? No, of course not. But because you're just a woman, well, suck it up and deal.
Would you pay for someone to tell you that? To your face? Me either, and yet I have to. Because he's a doctor and I was given a 'service'. I don't agree with the outcome of the service, but I will pay it. And tell everyone I know not to go to him.
Aside from the breast issue, anxiety is at an all time high here. Soph hasn't been sleeping much which has such an impact on her moods. She was prescribed a sedative, basically an anti-nausea med, but it really was helping. However, it was only helping at the adult dose, no where near as effective at the 6 year old dose. So, we only got a couple nights of sleep into her.
Last night she was acting very quiet, unable to make eye contact and lying face down on the floor, her really autistic behaviours. I tried to guess what had happened and hit upon something with her teacher.
I made quite a few jokes of the outlandish nature, like her teacher had decided teddy bears were evil and was creating a petition to outlaw teddies in NZ. That sort of just seriously random and outlandish statements to unarm her. She laughed quite a lot and in the end said that she was really scared to tell me what happened in case I was mad at her.
I asked if it involve Hamish, a really bad kid at school who she had a run-in with earlier this year. She said no, I could breathe again.
She said that she was trying to log in on the computer and she got her login wrong. Instead of SP2869 or whatever, she only typed in SP2 and her password. The computer was locking up after 3 attempts and the teacher came over to help. Some sort of disciplinary verbal exchange took place in which the teacher corrected Soph and Soph yelled at her and rolled her eyes.
Now, this sort of thing always happens at home. We call it the sassiness and we are working on correcting and replacing the behaviour, but in a child who is tired, not eating, anxious to begin with, it's hard to contain. I believe Soph was told it wasn't ok to yell at the teacher and roll her eyes and Soph felt truly awful about it.
She told me it was repeating in her head over and over and it just wouldn't stop. I tried to explain some things I've been taught to overcome ruminating thoughts, but of course, she didn't want any of it.
I made her write an apology card to her teacher and I hope the teacher sees this child is actually struggling and won't keep repeating the oft quoted, there's nothing wrong with this child; she's an angel.
We've had a referral to the child, youth, adolescent mental health care team (CAMS) and they're posting off a letter. We will likely receive it next week and I ring in to book. I don't know why it has to be this way, but it does.
Hopefully they'll be able to help us medicate this anxiety and get her into some sort of child therapy for her anxiety issues because anything I suggest to her gets shot down.
She's at a playdate today so I'm getting lots of doing nothing done. I've tidied up some recyclables that needed to be washed and sorted. Going through some old kids clothes to get onto an auction site. Some extra cash for xmas would be lovely.
Spring is here and so is the pollen. The pollen aggravates my sinuses and my myalgia is quite bad in my calves and arms. I'm just not sleeping well at all and I spend the entire day exhausted.
Thinking of investing in some herbs to trial.
Currently taking magnesium, calcium and spirulina for energy. It's better than it has been, but I'm not superwoman and that annoys me I hate life taking a back seat to fatigue and exhaustion.
About Me
- Jen
- I'm Jen and this is my blog. I'll take you through my diagnosis and life with an incurable illness. In 2008 I was diagnosed with Familial Mediterranean Fever but in July 2010 I was diagnosed with Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome. (google Familial Hibernian Fever) I'd really like to work as a fertility educator or an arthritis educator. I enjoy baking, trying to find 'good' Mexican food in NZ and my dream is to vacation in Tahiti. I'd trade money for Sleep, cats and warm weather.
Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) is a rare multisystem genetic disorder characterized by unexplained periodic episodes or "attacks" of fever associated with additional symptoms including muscle pain (myalgia), abdominal pain, headaches and skin rashes. The specific symptoms can vary greatly from one person to another. The duration of the characteristic episodes can also vary, lasting anywhere from a couple days to one week to more than one month. Onset is usually during infancy or childhood. TRAPS is caused by mutations of the tumor necrosis factor receptor-1 (TNFR1) gene that encodes the 55-kDa receptor for TNF.
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