Gaslights

This blog has been really neglected lately. Life has been in the way a lot.

Anyway, I've come across a number of articles about women's experience in the medical model I wished to share.

Sadly, the main theme in these is about women's pain and symptoms not being taken seriously by medical professionals. Any woman with endometriosis will have many stories to tell about being told it is all in their head or not they are just looking for attention. Sometimes the focus on this despite all evidence to the contrary that they begin to make you feel crazy, even when you aren't, rather like the lead character in the film, Gaslight.

One day I will get around to doing a post about some of the awful things doctors have said to me over years.

Anyway, there are some good reads here -


https://www.theatlantic.com/family/archive/2018/08/womens-health-care-gaslighting/567149/

https://www.wbur.org/cognoscenti/2018/08/15/why-dont-we-take-womens-pain-seriously-amy-carleton

From a favourite Crohn's blogger - http://opbmed.blogspot.com/2017/06/medical-gaslighting.html

A TED talk about ME/CFS, which applies to anyone with autoimmune disorders - https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

And to lighten to load after all of this, read this fantadfan piece that was at Edinburgh Fringe last year on Crohn's - https://www.bbc.co.uk/news/disability-45045223

The Future Is Now

I haven't been doing too well at writing this blog this year. Too much life happening, which is better than too much illness happening.

Anyway, there has been big news in Crohn's land today. The chemists who did the ground work for biological drugs like Humira were awarded the Nobel Prize in Chemistry today.

https://crohnsandcolitis.org.uk/news/nobel-prize-awarded-to-scientists-whose-work-led-to-adalimumab

This is a seriously huge deal. Not only are diseases like Crohn's getting a lot of press from this, but it is also highlighting the future of treatment for people who autoimmune disorders.

Humira and similar drugs are not without their problems; I've written about my experience loads on here. But when they work, they really really work. And they are considered treatment of last resort because of their cost.

The thing is, it is false economy to throw generic immunosuppressants that weren't developed with IBD in mind at people with IBD.  They either end up cycling through different drugs due to bad reactions, cycle through steroid treatment during flares ups or repeatedly end up in A&E or on the surgeons table. The cost of my almost five years on Humira still doesn't equal the cost of an ostomy, long term post surgical complications or being too sick to work.

Yes, it is expensive, yes, it has risks, and biological drugs are totally sci-fi. But they also show that the future is now.

World IBD Day 2018

It's World IBD Day once again.

And to mark the occasion, I thought you might like to see what £4500 looks like.

Seriously, that's more money than I have in my bank account at the moment!

I have no idea why the delivery company is wanting to send me quite this many at once, but hey ho, I'm sorted for the next four months. Must be their way of saying Happy World IBD Day! NowI need a bigger fridge...

Happy Hysterversary to Me! And Part 2 of Endometriosis Awareness Month

Today marks 9 years since I divorced my uterus! We parted company on an operating table at a hospital in middle England and my cervix and fallopian tubes went with it. Although I still have problems from time to time, it was still the best decision I ever made.

Being out of treatment options I was willing to consider for endometriosis, adenomyosis and fibroids led to my decision to part ways with body parts.

Like a lot of Endo women, my treatment journey started with birth control pills. Lots of them. 6 brands over 5 years. Plus the Nuvaring. And every one caused problems. I had my period for a month straight on the first. The second flared my eczema so badly that I looked like a fish for scaly skin. The third one gave me two periods a month (double the endo symptoms!). The fourth one caused panic attacks. The fifth raised my blood pressure and made me feel awful. The sixth one caused two periods a month again. With the Nuvaring, I broke out in a literal head to toe rash that was so itchy that I drew blood scratching. All of them messed with my ability to absorb vitamin B12 and none of them really worked on the pain and heavy bleeding I was experiencing.

Fuck that.

And my experience is far from unusual. So it being Endometriosis Awareness Month, it was very timely that comedian Samantha Bee brought this up on her show. I do love Samantha Bee. Not only is she a Canadian living abroad like me, she is also kick ass funny and on point. Do watch these, it says a lot about the lack og options for women with endometriosis and how women with endometriosis are treated more broadly by the medical and scientific communities.

Endometriosis Awareness Month 2018

Every March I keep thinking that I need to post something about Endometriosis Awareness Month and I often forget until it's the end of the month, then I'm scrambling for something. But this year, I came across the right thing to share.

I've always liked the CBC Radio show 'White Coat, Black Art'. The host is a doctor who reports on a variety of health issues and he can be brutally honest about how the medical model works. And sometimes, he gets brutally honest people to do pieces for the show.

This week's is about Endometriosis. It's been done by a woman who attends the Endometriosis Support Group I used to attend when I lived in Toronto. That group was a lifeline for me when I was navigating the murky waters of gynaecology trying to get answers, and I owe several debts of gratitude to many of the women I met there.

This piece is definitely worth a listen if you want to better understand what things are like for women with Endo. It is brutal in its honesty, especially where she recorded herself in a pain crisis. I found that particularly hard to listen to as I know EXACTLY what that is like. But it is all kinds of real.

http://www.cbc.ca/radio/whitecoat/endometriosis-my-painful-search-for-answers-1.4569537

Pancakes! Pancakes!

I'm Canadian. Canadians love pancakes. Like a lot. Well, actually we love maple syrup and pancakes serve as a good delivery tool for the liquid loveliness that would be a national drink if we hadn't all fallen into sugar comas.

It's Pancake Day, and normally as a Canadian Brit, I would settle into a stack of Canadian pancakes and bacon, smothered in maple syrup.

But today, I decided to do things the English way. English pancakes are almost like a French crêpe, but not as big and often plainer.

I never said I was good at making my food pretty.

The English are particularly fond of putting lemon juice and white sugar on theirs. Put on a big piece of deep fried dough, a Canadian would call that a Killaloe Sunrise Beavertail.

Things I miss from Ottawa

Personally, I am more fond of the Nutella and banana combination. Regardless, if you've never made English pancakes, this is a good recipe - https://www.bbcgoodfood.com/recipes/3374/perfect-pancakes

Like crêpes, English Pancakes can be done with savoury toppings. And for some reason, which I can only put down to wonky hormones from a phantom period this week, I was fancying savoury pancakes. I came across a recipe in the Co-op's latest magazine and it was surprisingly good. Not low residue, but sort of low fibre.

I adjusted the recipe as I was only cooking for me tonight.

Preheat the oven to 190C/375F.

4 medium to large chestnut mushrooms, washed and sliced
1 small garlic clove, crushed
A big handful of baby spinach, washed and stems removed
About 1/4 of a packet of Roule Cheese (or some other soft cheese with garlic and herbs).

Fry mushrooms and garlic in 1/2 tbsp of olive oil for about 5 minutes. Add spinach and leave it to wilt for about 3 minutes (or more if you need it really cooked). Add the cheese then stir until it melts and makes the whole thing creamy.

Put on a pancake, roll up and place on a baking tray. Cook for 5 minutes.

It was surprisingly good. Like really good! I would probably add some fresh ground black pepper next time, bit it was really good.

But of course, I couldn't break with the other tradition -

Nutella and banana!

World Toilet Day 2017

As a Crohnie, I always feel I need to give a shout out to World Toilet Day on 19 November each year. Anyone with IBD spends a higher than average amount of their time worth their toilet. While!e at times I resent the amount of time I spend with mine, at least I have one.

More people have mobile phones than have access to a safe and clean toilet. Says a lot about the world's priorities, doesn't it? Having access to a toilet does more for the overall health of a community than just above any other public health measure.

Have a read of this interview -https://www.un.org/development/desa/undesavoice/expert-voices/2017/11#36610

The global development items mostly people in the global West talk about are drilling wells and building schools.

No one thinks about the humble toilet or where poo goes. This year's World Toilet Day theme is about where poo goes. http://www.worldtoiletday.info/where-does-our-poo-go/

If you want to know what happens when poo doesn't get treated before becoming fertiliser, read this - http://www.iflscience.com/health-and-medicine/defecting-north-korean-soldier-shot-had-large-and-unusual-parasites-in-his-gut/

English Heritage have even gotten in on it this year. They have an interesting blog post about historic toilets - http://blog.english-heritage.org.uk/top-10-toilets-through-time/?utm_campaign=coschedule&utm_source=facebook_page&utm_medium=English%20Heritage


So give some appreciation to toilets today, and think about how to support those who don't have access to one.