Christmas Baking Disasters 2016

So the Christmas/Hanukkah/New Year's/Whatever You Celebrate I a on us, and that inevitably means making. Thanks to a few parties (and a cheeky request from a friend), I'm already on my second round of Christmas baking this season. It's amazing how the initial response of 'What's a Nanimo Bar?' from a Brit, quickly leads to 'Bloody hell, that was amazing, are there more?!' Thankfully, that's a recipe I have mastered.

What I have yet to master is gluten free baking. I have a number of friends who are Ceoliac, and as I am always up for a culinary challenge, I try to make at least one thing they can eat. Alas, this often results in more disasters than results, but hey, not everything can go right!

So this month's Co-op Magazine had a recipe for cinnamon cookies that didn't involve flour, so I thought I would give them a go.

It lists the following ingredients -

1 egg white
200g icing sugar
250g ground almonds
2 tsp of ground cinnamon

As directed, I beat the egg white with the mixer. This was the first problem. I have a standing mixer that has a deep mixing bowl, and with only 1 egg white, there wasn't enough in the bowl to work. So I had to do this by hand with a whisk, which does begin to hurt after a while when you are trying to get it to soft peaks.

Once I did that, I whisked in half the icing sugar as directed. It just kind of became a gunky mess. Then I stored in the ground almonds and the cinammon. The recipe says, 'until you get a stiff, slightly sticky dough's. Instead, I got this -



Neither stiff, nor slightly sticky. More crumbly like pastry. But not pastry, as there is no fat in it (other than the almonds). The directions said to chill it, so I put it in the fridge for a while.

Then the recipe said to divide the dough into quarters and roll it between two pieces of greaseproof paper. Well, as it didn't even stick together, this is what I got -

I tried adding another egg white to see if that would give it more to stick it together, but that didn't help. I gave up and binned it.

So now I was left with two egg yolks to use up, I made something wheat-y -



Don't mind if I do!

Crohn's and Colitis Awareness Week 2016

This is Crohn's and Colitis Awareness Week and I thought I should at least put something up here to mark the occasion even though I have been totally neglecting this blog as of late. Work and life have just been getting in the way.

This year, Crohn's and Colitis UK are doing a social media awareness campaign called Crohn's, Colitis and Me where you can put your details into their website and it generates an awareness poster. Here's mine -

I should add that the programme only lets you pick three symptoms, so there are plenty missing like joint pain, unintended weight loss, diarrhoea and trapped wind, never mind stigma and other people's ignorance (including doctors).

While I could have put some soppy sentimental stuff about what gets me through, I thought I would be more practical about what I want when I'm not feeling well. I tried to put 'bloody mindedness' instead of stubbornness, but their system refused it! And if I had more room, I would have written more about food (of course).

Science!

I went to the local science museum this weekend. Despite it being down the road from my work, it has taken me years to get around to going there. It was good fun, but I need to go back as it was a bit of a whistle stop tour with a nine year old in tow  (actually, I was the one being towed) who was determined to show me EVERYTHING she thinks is cool there.

One of the highlights of the day was the heat screen, which shows temperature variation between whatever is in front of it. Blue means cold (about 22°C), green means cool, yellow means warm, and red means hot (about 40°C).

I found this particularly entertaining because it is the best visualisation of living with Raynaud's Phenomenon that I have ever seen. 

This was my right hand on Saturday afternoon.

Notice how blue the very tips of my fingers are, nevermind most of my hand. At least my lower palm was sort of warm!  I should add that I had been indoors for hours at this point and it was rather warm in there and I was not having a Raynaud's attack.

For comparisons sake, here's my hand next to someone without Raynaud's -

Quite a difference!

So yes, my hands really are that cold. Science says so!

Ever Have One of Those Days?

Never mind my sore arse today, my bread machine produced this loaf today -

Brand new yeast, so I have no idea what happened, but I think it will use it as a door stop.

Don't Take a Seat

Someone took my chair at work. I came into the office a few weeks ago and my chair was missing. That was 17th August. It's now the 28th of September and it still hasn't reappeared. The problem is, this isn't just any old chair; it's a specialist ergonomic chair that is set just right for me. It was even labelled with a big sign with my name on it.

Kind of like this. But not this one.

Chairs like this cost an arm and a leg. Okay, not literally, but they are ridiculously expensive and I had to fight tooth and nail 8 years ago to get my employer to buy me one. I pretty much had to argue that £800 for a chair, footstool and ergonomic fitting was cheaper than me going off sick for several months.

So, with my chair missing (but not my footstool, which replaced the old one that also went missing earlier this year), I have been forced to use the bog standard office chairs. In theory, these are adjustable, but half of them are broken in some way and they are too big for my little frame. And they are fucking killing my back. 

The response from the Building Management has been snarky at best. Mine is not the only chair that went missing that day; two others disappeared from my department that day. My manager is pretty pissed off with their responses so far, and today she directly asked them if they will be paying for the replacement. In the meantime, I hurt. Really hurt. A lot. And this really isn't helped by a phantom period shooting down my back.

Amazing how it can still feel like this when I don't have a uterus anymore.

The problems I have with my back are not your standard wear and tear on discs problem. In essence, it's a form of sacro-iliactic joint dysfunction. And it is a literal pain in the bum. 

In short, I have weakness in some of the muscles on the right side of my hip. No amount of strengthening exercises has fixed it. 

This puts pressure on one particular muscle called the piriformis, which goes into extreme spasm. Think of the worst muscle knot you have ever had and stick it in your right bum cheek. Then have this spasm lock your sacro-iliac joint on one side. This joint doesn't have a great deal of movement in it, but its purpose is to act as a shock absorber, kind of in the way that a bridge has a bit of give in it to help it deal with the weight of cars going over it. Then add the inconvenience of your sciatic nerve running along the piriformis muscle. In my opinion, this is one of the human body's greatest design flaws (along with the immune system's ability to start attacking itself).

What caused this mess you say? Endometriosis. The theory is that the years I spent in chronic pain from endo, which always radiated to the right on me, meant that I was probably walking and holding myself oddly to protect the worst affected side. In short, I have screwed up my back and hip muscles protecting myself from the pain of Endometriosis. 

The most important thing I can do for this day to day is to keep moving. Stretching and flexing the troubled muscle regularly is the best thing for it. Good thing I like to walk. However, doing stretches on the office floor is kind of frowned on. Balance the need to keep that joint moving against the sometimes crushing fatigue I experience from Crohn's, and you might start to see the complexity of the problem. 

The trouble is that I need to sit to do my job and sitting in a badly fitting chair will set off the problem in a short period of time. It's not enough to just get up and walk around to stretch; that muscle can start spasming within 10 or 15 minutes. And once the joint locks up, I'm in trouble. 

I can't believe that I actually found this meme!

So, thanks to my missing chair, I am tanked up on co-codomol, burning myself with heating pads and anxiously awaiting an appointment with my osteopath tomorrow. All this while trying to still work and doing battle with Building Management over how my chair went missing in the first place. Oh, and we are also being inspected by Ofsted this week....

Bumper Crop

The only thing my garden grows, aside from weeds, is wild raspberries. The first year I lived here, the bush was small and I got two whole raspberries from it. The second year, I was sick and passed the handful of berries that came off it to a friend. Last summer, I was still on a low-fibre diet and berries were on the 'no go' list.

This summer, I threw caution to the wind, and ate the berries. And have had no bad effects, whoo hoo! I had about three weeks in July when I got small handfuls of berries most days, which I rather enjoyed. This was despite my neighbour's petunia plant growing under the fence and wrapping itself around the bush. They didn't seem to do one another harm, so I left them alone and the raspberry bush is bigger than ever.

I got home from holiday yesterday to find that the bush has sprouted even more berries!

I got half a bowlful today, and there are about that many more that need more time to ripen.

I had them with plain yogurt, and they were very tasty!

So I can drop one more thing off the 'no go' list.

Oh Deer . . . .

I cooked up the last of the venison I had in the freezer this weekend. Sniff.

I tried a new recipe for venison pie, using this one as inspiration - http://britishfood.about.com/od/recipeindex/r/venisonpie.htm

I didn't take photos, but I adapted it a bit.

I used 1lb of diced venison, and browned it in a bit of sunflower oil.

I peeled and chopped two carrots, and put them in the slow cooker. Once the venison was browned, I transferred it to the slow cooker.

I peeled and chopped two shallots and fried them in the pan until translucent. Then I put half a tablespoon of flour on the pan and half a teaspoon of mustard powder,mixed that up, then deglazed the pan with about 150ml of beef stock. That made a big gloopy mess that I transferred to the slow cooker.

I added 1/2 tsp of thyme, 1 1/2tbsp of malt vinegar, 1/2 tbsp of brown sugar,1/2 tsp of nutmeg and a dash of ground cloves and gave that a good stir. Then I poured half a pint of Hook Norton Old Hooky ale in the pot, popped the lid on and cooked it on high for about 6 hours.

When that was done, I popped it in a pie dish and covered it in pre-made puff pastry (as pastry is one thing I won't make from scratch) and brushed it with beaten egg.

I pre-heated the oven to 220C/420F and popped the pie in with the intention of turning it down to 190C/375F after 20 minutes. The alarm went and this had happened -

Whoops! This is what happens when you are using someone else's oven!

It was pretty much done after 20 minutes, so I tucked in.

Tasty stuff!

Worthy of Shiny Leaflets

I had a new delivery of Humira yesterday. This was the delivery of the new-fangled, super-concentrated, supposedly improved version. The one that I got a shiny leaflet in the post about (twice) and when the company rang to book the delivery, they asked again if I knew about it.

Pretty much, they've shrunk the volume of liquid in the auto-injector and made some changes to the packaging. They also have said that they have removed an ingredient (Citrate), which supposedly is the cause of the post-injection wasp sting.

So here it is -

And this is the new style auto-injector -

The biggest difference is that the window is bigger and the casing is ever-so-slightly smaller. And the painted the '2' white.

The box came with another shiny leaflet. Which I think looks like an advertisement for batteries from a distance.

And that was about it.

So tonight was a jab night and I tried out the new version.

It was a little strange. It injected mighty speedily this time.

And there was no wasp sting. That was a little weird. It fact, I had to double check that the needle went off at all. It definitely did. But rather than immediately grabbing for ice pack, it was sort of okay and wasn't stinging while I dabbed the resulting spot of blood. Very weird. I wondered if I had got a dud one for a bit, but then the inevitable post-Humira yucks set in about 15 minutes later, pretty much on schedule.

So, possibly it is worthy of multiple shiny leaflets after all.

Baking Plan B

I have an unexpected evening off tonight. An evening off has become a rare thing as of late, so I rather treasure it. I made a batch of pesto for the freezer, and wanted to bake chocolate chip cookies. Then this happened -

Short of shortening!!!! Diaster!!

Okay, it's actually margarine, but you get my point. I can't 'halve' the recipe as it calls for an odd number of eggs and it's hard to cut an egg in half.

So out came my trusty Better Homes and Gardens cookbook and I found something needing only half a cup of margarine.

Brownies! Cue unsweetened Baker's chocolate from Canada and my Pyrex jugs to melt it.

Boiling water in the big one, chocolate and margarine in the other. I do own a double boiler, but don't remember the last time I used it as this is involves less mess and works just as well.

Then I mixed in the other bits and made Brownies.

1/2 cup margarine -melted
3 oz of unsweetened chocolate -melted
1 cup of white sugar
1tsp of vanilla
2 eggs
2/3 cup of flour
1/4 tsp of baking soda
1/2 cup of chocolate chips

Mix everything in order and pour into an 8" square pan. Bake at 180C/350F for 30 minutes.

Ta da! Brownies! Plan B is tasty!

Well, This is Interesting

I got some correspondence from the company who distribute Humira this week. It was a shiny leaflet, telling me all about 'the' changes' I would seeing my next delivery.

It states that the volume of liquid in the injectors is changing, and will now be half the amount.

I do love how they feel the need not only to send this notice out on glossy paper (twice in one week), but also the put this lovely stock photo of two people and a dog walking through tall grass. In the 24 hours after one takes this stuff, I can assure you that this is not what you feel like doing.

The most interesting part of this letter was this statement - 

Pretty much what it says is that they are removing an ingredient from the formula called citrate. They acknowledge that this causes 'a stinging sensation', which anyone taking this drug will tell you. It's bad enough it's an injection, bad enough that it's jabbed into you thigh or abdomen, and bad enough it makes you feel like poo, but imagine purposely having a wasp stinging you every time. And that stinging sensation lasts. Ow!

This is a universally reported side effect, which in the product leaflet is listed as 'discomfort at the injection site'. The letter doesn't indicate what purpose this ingredient served or why it wasn't removed sooner. So why now?

What is an interesting coincidence is that Humira goes off patent later this year. When it's older brother Remicade (known as 'Rat Crack's amongst Crohnies), there were two 'bio-similar' drugs on the market within weeks. Drugs which are much much cheaper. The same is expected with Humira this autumn, particularly because Humira is self-administrated at home, rather than given as a day patient at hospital as an infusion, which makes it much cheaper anyway. At £500 a shot, I'm not surprised they are looking for ways to make it supposedly 'better' so that patients demand it over the new, cheaper alternatives.

My next delivery is due within the next week or two. We'll see whether or not these changes make any difference.

A Final Word on Conference Food

This post is a week late as I left the conference in St. John's last Sunday for the over heated climates of Toronto and the Ottawa Valley in June. I've just landed in Dublin on my way home, and I am feeling thankful for grey rainy days.

Anyway, on the last day of the conference, we were given packed lunches as everyone was leaving at different times and some of us were leaving before the ending to catch flights.

I asked if I had a special one packed due to my dietary needs and was told 'no' as the contents does not contain any of my allergens. So I inspected the bag before walking away with it. Let's have a look.

Looks innocent enough 

The contents. On the surface, nothing wrong here.

About a third of us were going to the airport before lunch. While I would normally be very happy to be given a bottle of orange juice, I can't take it through airport security.

Yogurt, which I love. Except that yogurt is treated as a gel by airport security. See above. And as yummy as blackberries are, they don't really mix with a low fibre diet.

Granny Smith apple. Love these. But I have to peel them as the peel is all insoluble fibre and even if I had a knife, I can't take that through airport security.

Sandwich. White bread and ham. Pretty boring. Except it's full of mayo. Which is mostly eggs, which I am intolerant too and is on the list if allergens I gave when registering for the conference. This is on of my British pet peeves because mayo is on most commercially pre-prepared sandwiches in the UK. And not only is it full of eggs, it's also gross.

Cookies. Oatmeal raisin cookies. And I'm allergic to grapes. Which was definitely on the list of allergies I gave the conference staff.

So, the two things I can get through airport security contain things I can't eat. I asked the staff person giving them out what was on my dietary needs list. Only things listed were shellfish and grapes. Not eggs, soya or fish, nor that I am on a low fibre diet for Crohn's Disease despite me giving all this information when I registered for the conference. I guess they were only interested in protecting themselves from the liability of directly killing me through a full blown allergic reaction and not about making me sick. Cheers for that!

I didn't bother arguing about it. The woman giving them out is pretty low down the food chain there and it was the last day anyway. When I got through airport security, I went straight to Tim Horton's for a bagel with cream cheese and a double chocolate donut. Like all good Canadian expats do when in Canada.

Laments of a Travelling Humira User

As mentioned in my last post, I'm in Canada at the moment and was attending a conference in lovely (albiet, cold and damp) St. John's, Nfld.

I've had a lot of flights on this trip, and this is the first time I've had to fly or go abroad with Humira. This was the cause of some anxiety as there was so much to sort out. 

It took ages to get someone hold of the pharmacist at the company who delivers it to confirm whether or not what the internet was saying about not needing to pack it with ice pack is was true. I couldn't re-freeze the packs at one of my stops, and airport security won't let them through partially frozen as they are a gel. Several weeks of calls, and I had the pharmacist tell me that I actually could leave it out of the fridge if the environment wasn't too hot, but fridge is better and once it's been out, be sure to use it within two weeks. That contradicts what I had been previously told, but hey-ho, it was less to carry.

If I didn't absolutely need to take the ice packs, then I need a new insulated bag, because I wasn't taking that hideous pink thing again. 

http://foodlovingcrohnie.blogspot.ca/2015/08/the-silly-season.html

I also needed to sort out how and where to dispose of the sharp, as I really didn't want to haul the used on home in some puncture-proof container.

Then I had to get a note from the doctor saying I was carrying a needle on a plane for medical purposes. The NHS won't pay for that, so the three line letter that I pretty much wrote myself cost me £25 (!!!), and I have yet to have anyone ask to see it.

So I had all that to sort, plus having a bit anxiety about whether or not I was going to get hassles from airport security. Thankfully I didn't, but that's possibly because I just told whoever was checking my bag that I was carrying injectable medication before they put it through the scanner.

To be on the safe side, I emailed the conference centre I was staying at, asking if I could store my Humira in a fridge there. The person who responded and very kindly suggested that they store it in their staff fridge for five days as there was no fridge in my room. 

I set myself about a dozen reminders to remember to pick it up on Sunday before I flew out to my next destination. I asked the staff for it after breakfast.

The insulated bag it was in came back soaking wet. You can't see it in the picture, but it was absolutely soaked through.

Soaked right through to the box inside.

And completely soaked the letter my GP wrote telling airport security that I had permission to carry a needle on a plane. I paid £25 for that!

It was so wet, the bag soaked the bed in my room. Good thing I was leaving that day!

I had to get a flight to my next destination, so I just put everything in a Ziploc bag, shoved it in carry-on and went. By the time I arrived and had a better look, it was like this.

It pretty much fell apart. It was also beginning to soak through the back of the packaging over the needle itself. Good thing I was taking it that night.

Thankfully, the injector is plastic and unlikely to be water damaged, but still. The injector itself seemed fine, and everything I could see through the little window on the needle looked normal, so I took it that night as usual.

And I was also able to rescue that letter from my GP with very careful handling and allowing it to dry flat. At least I shouldn't have to pay £25 for another one.

Oh Soy!

One of my discoveries in occasionally keeping is blog is reading other people's blogs on living with Crohn's. One of my favourites is the Mind Your Body Blog, which is written by Oak Park Behavioural Medicine in Illinois. A bit random with a Canadian expat in the UK, but hey, stranger things have happened in the internet!

The writers are health psychologists, and one of them is a fellow Crohnie. She has also recently been contending with one of the banes of my existence - soy.
http://opbmed.blogspot.co.uk/2016/06/lets-talk-about-soy.html

I've blogged about my soy intolerance before - http://foodlovingcrohnie.blogspot.co.uk/2015/04/oh-canada.html It's a bloody pain (literally).

I'm back in Canada at the moment and am attending a conference in St. John's before heading to Toronto. This is my first time in Newfoundland, and it really is as awesome as Newfoundlanders say it is, despite it being all of 6 degrees whole I've been here (it's mid-June!!)

But the problem with conferences is conference food. I've given my lengthy list of allergies and intolerances to the conference staff, but most of what they have offered is general alternatives (gluten free, veggie, etc), rather than a handy ingredient list. Most of the food has been served buffet style so I've been able to pick and choose what I'm eating.

Thursday lunch time, the offer was tomato soup with grilled chicken salad. I skipped the salad (not low fibre) in favour of soup, crackers and chicken, and I was doing a happy dance in the queue upon reading the ingredients list on the Premium Plus crackers and finding out they are no longer using soybean oil.

So I munched down on a fairly low carb lunch, and it took about 20 minutes to start regretting it. Horrible stomach cramps and trapped wind. Cue Wind-ezze, which doesn't relieve it. Start doing the mental arithmetic of everything I've eaten in the last 24 hours. Can't be the Rice Krispies at breakfast. Can't be the cheeky DQ blizzard with Skor I had despite the cold weather. Somehow managed to get dinner down and continued to battle stomach cramps for the rest of the day and well into the evening. I'll spare you the description of the carnage in the loo at 5 the next morning.

Of course, when this happens to a Crohnie, you start to panic a bit about flare-ups, especially when you are away from home. I try not to panic, but it was a worry as I have been under a lot of stress at work lately, plus the general stress of travelling. Thankfully, I was a lot better on Friday, which was especially good as I spent all day on a coach without a loo. Even managed a trip to the pub for proper Canadian wings and a local beer. That went down no problem. So what's going on?

Saturday night was a banquet, which was held kitchen party style, and was great fun. I got into a random conversation with some people at my table about food allergies and intolerances. I mentioned not being able to eat soya, and one of the other people at the table said she can't eat it either. "What did you think of that so-called chicken at lunch on Thursday?", she says. "I had that," I said. "Yeah, hardly any chicken in that," she says. "Whenever it's processed into those lovely flat shapes for salads, they use soya as a filler to get the texture, and it's like 2% chicken protein once they are fine with it."

"Oh bloody hell, now I know why I was sick!" I say. "Same here," she says. "I hate not getting labels."

So at least I know there is nothing to panic about and this was just the constant presence of soya in North American products biting me in the ass (literally) again.

World IBD Day 2016

So 19th May marks World IBD Day, and I am supposed to wear purple to mark the day and am probably supposed to say something inspiring about living with IBD. Well, I lack purple articles of clothing that are appropriate for the office, and inspirational isn't my style.

I will say that living with Crohn's Disease is, well, pretty shit.

I will, however, use this opportunity to say that I passed Masters Dissertation with a rather respectable grade, which means that I am pretty much finished my Master's Degree. I am equally happy and relieved about it. Being World IBD Day, I will say that I not only completed this while working full-time, but also while dealing with IBD. I completed one module while in a yet-to-be- diagnosed serious Crohn's flare-up with one third of my body weight melting away, and another while tanked up on Prednisolone and battling serious side effects, including a pred-induced mental health problems. The Dissertation was written while trying to recover my physical and mental health. And all this while battling a medical model that is incapable of seeing me as an individual.

Inspiring? Well, if you think so. I just know it was bloody hard work.

#WorldIBDDay #fuckyoucrohnsdisease