Thursday, November 29, 2012

How to be happy

Every so often, I check the stats on this blog to see how people are finding it. I don’t do this with the intention of changing anything; it’s just interesting to know what people are looking for. And sometimes kind of funny, when someone has searched something like “what to do when you vacuum up a pair of stockings” and ended up on one of my posts. Sorry to whoever that was – I really doubt you found anything helpful here!

Last night, though, I found some search keywords that caught me off guard. “How to be happy with autoimmune” and “Upset over confirmation of lupus.” I don’t know if this was the same person searching, or if it was just a coincidence. Either way, I really felt for the person.

After seeing this, I wondered if they had found anything helpful on here. Most of the time, I’d consider myself to be a happy person, even with all the health problems. But I haven’t always been. Each diagnosis has hit me pretty hard, and I have suffered from periods of depression in the past.

Recently, I was asked what my advice would be for someone newly diagnosed. This probably ties in to this quite well. So, this isn’t quite a “how to be happy” guide, but this is what I want to say to people newly diagnosed and to the person who made those searches, if they happen to stop by here again.

Allow yourself time to grieve.
Every diagnosis, I’ve had a period of grief for. At the start of this year, I was very down after being diagnosed with lupus. A few months ago, I had some very tearful weeks when that diagnosis went away again. It’s normal to felt kind of crap when you’ve just found out you have a chronic illness or when you’re feeling stressed out by symptoms that don’t yet have a diagnosis. Cry if you need to. I’m rather fond of watching sad movies and books, and pretending I’m just crying for the fictional characters, but crying just for yourself is all good too. Don’t listen to anyone who tells you to stop moping, or asks you “when you’re going to get on with your life?” Like any type of grief you need to do it in your own time and in your own way.

Find support.
Whether it’s in real life, or online, getting in touch with other people with chronic illnesses was one of the best things I ever did. Ask questions, or just have a rant, with people who understand what you’re going through. If you’re not sure where to start, have a look at Super Young Arthritics of New Zealand on facebook – it’s worldwide, not just NZ and full of awesome people.

Laugh. A lot.
Funny movies, good friends, whatever it is that works for you. Do things you enjoy. If you can’t do the things you enjoy because of pain or fatigue, are there parts of the things you used to enjoy you can still do? Are there some hobbies you can still do, even if you can’t do all of them? What is it that you like about these activities? Is there something else that gives you the same feeling? Remember it’s not all or nothing. Just because you can’t do something in the way you used to do it, doesn’t necessarily mean you can’t do it all.

Enjoy the ridiculous.
I have a pretty dark sense of humour at times. I’ve always been a fan of laughing at myself, and having chronic illness does provide a lot of material. Sometimes it confuses other people, when I laugh about the fact that I got stuck on the floor, or some other ridiculous thing that’s happened. Believe me, I’m not laughing at the time. But afterwards, being able to see the funny side really helps me. I think this has also helped me, when it comes to being more open with people about what’s going on. Sometimes it’s hard to tell people about the illness stuff, because I don’t want people to think I’m complaining and I don’t want to bring them (and myself) down. At the same time, I’ve always been someone who needs to talk about things to process them. For me, talking about the funny stuff, and laughing about the ridiculous things that happen, has often worked as a good compromise.
There’s also a slightly malicious side of me, that enjoys messing with people a little. When people ask me why I walk with a crutch, sometimes I’ll tell them I got bitten by a mountain goat or some other silly story. Even if you’re not actively trying to mess with people, their reactions to stuff can be pretty funny. I’ll never forget the day I’d left my front door open, and a poor delivery person walked in on me injecting my stomach with methotrexate (I did explain I’m not a drug addict, but I’m not sure she believed me.)  
Everyone has stories about weird or funny things that have happened to them in life. My guess is, the delivery woman went home and told her friends about the strange woman she walked in on, injecting herself. Illness doesn’t have to be off limits from these crazy stories.

Tell someone how you’re feeling.
Whether it’s your doctor, or a friend or family member, if you’re feeling really down make sure someone you trust knows what you’re going through. If the first person you try telling doesn’t get it, talk to someone else. Going to a counsellor can be really helpful as well. I worked for a mental health helpline for years, and few times when I was in a bad space, I did call the very service I worked for myself. There’s absolutely no shame in asking for help or support. And if it goes from feeling down, to thoughts of hurting yourself, please seek support immediately. Things can always get better, even if it doesn't always feel like that.

Thanks for reading
Little Miss Autoimmune.

Monday, November 19, 2012

Cooking for Gluten-Free Guests

Last night, I had dinner with my dad and some family friends. One of the friends had made the dessert, and she admitted she’d considered telling me the base was made of gluten-free biscuits when in fact it was made of Digestive Wheat Biscuits. While I was very thankful she did own up, and admit the food was gluten-packed in this case, I know very well she’s done similar things in the past and only admitted in when it’s far too late and I was already suffering the consequences of being glutened. 

For anyone else who’s considering lying about the content of their food – PLEASE don’t do this. It’s not about the person being picky, the consequences of eating food when you can’t safely do so are usually pretty hideous, and can even be life-threatening. Even if you think the person is exaggerating their allergy, are you willing to bet their life (and your friendship) on it? I know I for one would much rather be hungry than sick, so if the food's not allergy-friendly just let the person know.

In my case, Coeliacs Disease isn’t life-threatening, and this was not a case of the friend thinking I was exaggerating – she just didn’t really understand what Coeliac Disease is. After a quick explanation of the long and short term effects of it, I’m confident she won’t be doing this again.  

When you first get a diagnosis of Coeliac Disease, it can be kind of intimidating not knowing what to cook. Even more intimidating, figuring out what to make if you’re having guests over and they’re gluten-free but you’re not. I often get asked what my advice is for catering to gluten-free guests and these are my top tips. They may also be helpful coming up to the holidays if you’ve only recently been diagnosed.

1)    Whole food are often naturally gluten free, i.e. meats, eggs, fruits and vegetables – basically anything that’s pretty close to the state you would find in nature. Be careful of anything that comes in packets though, as these may have extra bits and pieces added. Always check labels!

2)   When thickening things like soups and sauces, you can easily sub rice flour, which is gluten free, in place of normal flour (again, check the labels to make sure.) I’d actually recommend doing this for sauces and soups even if you’re not gluten-free, as they come out smoother and freeze better.

3)    If you’re making a pasta dish, you can sub GF pasta for regular pasta pretty easily. They cook in about the same amount of time, and have a similar texture. Probably best to ask your guests for recommendations for brands, as these will vary from country to country. I always go for a brown rice pasta, rather than a white rice or corn one, as brown rice is a bit easier for sensitive tummy’s to process. When it comes to bread on the side of dishes – you can buy some gluten bread yourself, or ask your guest to bring a couple of slices with them. Most gluten free breads taste better when toasted or heated, so you may want to try that.

4)    Desserts: Creamy desserts are more likely to be gluten free. Recipes for custards, Panacottas, homemade ice creams, ambrosias – all those kinds of things – are often gluten-free already or can be easily converted. Many bought ice creams or frozen desserts are also gluten free, and will be labelled as such. Meringues and Pavlovas are also usually an option – just steer clear of the malt vinegar!

5)    If you want to convert a favourite cake, biscuit, or slice recipe, this is my method. It took much experimentation, but this does give results very similar in flavour and texture to the original recipe. So much so, that people often don’t realise it’s gluten free.

                  Cakes: Replace the flour with half ground almonds/half rice flour. Use a                                 gluten-free baking powder (most supermarkets stock this.)

                        Slices: Replace the flour with half ground almonds/half rice flour. Omit                                       the baking powder.

                        Biscuits: Replace the flour with one third ground almonds/one third 
                                          rice flour/one third corn flour. 

Of course, as always, check the labels of any other ingredients. Things like chocolate chips or vanilla essence may have gluten in them, but there will usually be at least one brand that doesn’t.

These tips only apply to gluten-free. If your guests are grain-free, dairy-free, egg-free, sugar-free, soy-free, or have other allergies, as well – you’ll need to check with them for details of what they can and can’t eat, or you may like to have a look at websites such as Allergy Free Alaska, or Against All Grain (there are lots of others but those two are my favourites.) If you’re not sure about a particular product, ask. I can’t tell you how many times someone has very kindly bought a gluten free product for me, only to discover it contains apple or cider vinegar and I’m allergic to apples. 

As always, this is not intended to be medical advice. If you’re not sure about anything, check with your health provider as they will be able to give you far better answers than I can.

If you have any other tips or question you’d like to share, feel free to add them in the comments.

Thanks for reading
Little Miss Autoimmune.

Wednesday, November 14, 2012

Hair, Glorious Hair

I’ve always been a bit of a hippy when it comes to my hair. I let it grow and grow until it gets slightly ridiculous and then finally give in and get it cut. 

 A few years ago, I was having a lot, and I mean A LOT of problems with my shoulder joints. I was working in an admin role at the time, and I think the amount of computer work was largely to blame. Eventually, I could no longer type and had to resort to voice software or lying flat on my back with a laptop just to check my email. My shoulders got to the point where I couldn’t raise my arms at all, and turning over in bed was accompanied by a few very loud screams and tears.

At that point, my hair was all the way down my back. Washing it when I couldn’t raise my arms was near impossible, as was brushing or styling it in any way. If you’ve never had hair that long, you may not realise that if you don’t plait it at night, it pretty much turns into a giant dreadlock while you sleep. It had to go.

So, I cut it all off, and I got the most compliments I’ve ever gotten about a haircut. But I hated it. Not because I thought it looked bad, but because I felt my disease was controlling everything in my life. I couldn’t even choose the length of my hair.

Skip forward a few years, a few cortisone shots to my shoulders, and a partial remission....

I don’t think I blogged about this at the time, but the trigger for Raynaud’s and some other symptoms in me last year was actually hair dye (I can’t say that with any scientific accuracy, but I’m pretty sure it was true.) I’d dyed my hair once before, and experienced a pretty bad flare immediately following. I’d assumed, at the time, it was either coincidence or down to the latex gloves the stylist had been wearing as I am badly allergic to latex. But, the night after having some foils done the second time (with the stylist using non-latex gloves) I woke at 3am to find my hands turning blue and my lower arms doubling in size with swelling. After a bit of internet research, I found it’s actually pretty common for SLE patients to experience flares or for symptoms to be triggered by either chemical or hena type dyes. While I don’t have a clear diagnosis of SLE, my guess is if it can happen with SLE it can probably happen with other autoimmune disorders as well anyway. The whole thing left me a bit wary of doing anything to my hair, and since I’ve been so sick in the last year it’s been a long time between hair cuts for me!

So, just as I was gearing up to get my hair cut again, I saw an ad for the Pantene Beautiful Lengths Programme.

When my mum was diagnosed with a terminal brain tumour, she received a wig from the Look Good Feel Better Programme. I do really think this helped her confidence, at a time when things were pretty difficult. While what I went through with having to cut my hair was nothing in comparison to loosing your hair because of cancer and chemotherapy, it did give me some tiny insight as to what that might be like.

My hair is not always that healthy. The diseases I have do cause hair loss, as do the types of chemotherapy I’m on (though of course not the same level of hair loss you see with the doses of chemotherapy used for cancer.) But lately, it’s been looking pretty good. It was long enough to meet the minimum donation requirement, and I’ve only ever used semi-permanent dyes (and those only sparingly as discussed above!) So, I decided to cut and donate my hair for use in wigs for cancer patients. 

I swear my elbow and shoulder joints breathed a sigh of relief as I washed and plaited my long hair for the last time last night. Though my joints are nowhere near as bad as they used to be, they were still getting pretty sore trying to keep the lengths from tangling. My neck may actually feel some relief too - the hairdresser weighed my ponytail for me. It was 79grams!

This is going to be way easier to take care of, and I’m pretty happy with how it looks. I know I don’t look terribly impressed in this photo, but that’s just because I was feeling quite ill when I got home. Bit too much sun, and not enough food today. Some dinner, a few meds and a lie down and I’m feeling much better!

 If you’re thinking of donating your hair, all you need is 8 inches/20 centimeters. Don’t be alarmed by the photo of my ponytail – that’s 15 inches/38 centimeters. I figured if I was going to do it I’d go the whole hog!

Thanks for reading
Little Miss Autoimmune