Butterfly Rash

It's summer in New Zealand, and for me summer means bad flares.

According to the stats, a lot of people end up on this blog after image searching butterfly rash, malar rash, SLE rash or some other variant of the same thing. They end up on this post I wrote when first diagnosed with lupus, and I'm pretty sure a picture of me in face paint is not really what they're looking for. 

I've been meaning for a while to post a proper picture of the butterfly rash I get, but it's been a little difficult to get a decent photo. Mainly because when it's bad enough to warrant a photo, I'm usually pretty unwell and don't have the energy to try very hard. The rest of the time, the rash doesn't look that different to sunburn or rosy colouring so there seems little point in capturing it on film. I've got an appointment with my dermatologist coming up, so when it came up badly on Saturday night I took this photo.

Butterfly/malar rash

The lighting's in this picture isn't great but you can still sort of see the redness and swelling across my cheeks and the bridge of my nose. For me, it comes up very intensely at night but is usually not too bad during the day. 

Little Miss Autoimmune

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.

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.

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

Popple-Ox

I noticed this morning that my hands are covered in little blisters. This isn’t really a good thing – they’re annoying, painful and itchy, but when I saw them I had a moment of reflective thankfulness. A few years ago I had these blisters constantly. They’d go through cycles of appearing, then popping and bleeding, then just as they were starting to clear, new ones would appear. I had a couple of years where I couldn’t make fists, because every time I did my knuckles would split open and bleed some more.

It’s been a while since I’ve had this problem. In the last few years, they’ve appeared a few times when I’ve had particularly bad systemic flares, but it’s been a long time since they’ve been an everyday problem. So much so that when I first felt them on my hand this morning, it took me a while to recognise what they were. I realised I haven’t had them once in the time since my Raynaud’s first appeared, as I couldn’t work out whether wearing gloves would be helpful or harmful to them (my hands were cold so I decided to risk it.)

I’m hoping this flare up will pass soon as I’m not enjoying my hands being itchy and gross, but I’m so thankful that I don’t deal with this everyday anymore, I can deal with it for a few days.

I just looked up the proper name for this rash as I couldn’t remember it: pompholyx. I was thinking something that sounded like Popple-Ox. I don't think I was that far off, but I'm not sure my dermatologist would agree!

Thanks for reading!

Little Miss Autoimmune

Better the Monster you know...

On Thursday, I had an appointment with my new Rheumatologist. The result? Apparently I now don’t have a diagnosis of lupus.

This was a bit of a surprise for me. It was quite confusing, as it almost seemed the doctor was implying that I’d diagnosed myself with it. I knew very well that I hadn’t, but I did start to doubt myself. Had I totally misunderstood what my previous doctor and nurse had been saying? Eventually she explained that yes, I had been told I had lupus, but that was based on some of my blood tests being positive, but others done later (which are more specific to SLE) came back negative. 

We went round in circles for a while, as I tried to understand what was going on. Basically, though I don’t have drug-induced lupus, which is curable, there is still a possiblity that one of my medications could be causing an ANA-type reaction, which would explain my symptoms and blood results without the lupus diagnosis. Well, it would explain them, if most of the symptoms hadn’t started years before first taking this (or in some cases any) medication. So after discussing this for a while, the doctor decided that actually I do meet quite a number of criteria for lupus, though still not enough for it to make a clear-cut diagnosis. She said they haven’t ruled out lupus, so essentially I don’t NOT have lupus, but we can’t call it lupus yet either.

I was quite upset when I left the office, but I wasn’t entirely sure why. Shouldn’t I be happy that I potentially don’t have a rather horrible disease? Well, happy might be pushing it. The name lupus doesn’t actually change anything. I have the same symptoms either way, and my treatment options (or lack of) are the same. So why was I so upset?

I kept going over one particular part of conversation in my head. For several years, I’ve had reoccurring symptoms where it seems like I have a urinary tract infection. Every time this happens, my lab tests come back abnormal but showing no infection. A couple of weeks ago this happened again, and the GP I saw said it was most likely down to the lupus. This didn’t really change anything, as it didn’t provide a solution, but it at least provided an explanation for symptoms that had been a mystery for years. I asked the rheumatologist about this, and she said “well, inflammation in the urinary tract could cause those symptoms and produce those lab results, and that is something you might expect to see in lupus, but we don’t want to call it lupus because then we might not investigate and miss something else.”

Something else.

For years, being sick with symptoms that didn’t have an explanation was kind of like having a dark shape in my room at night. Maybe, when the light was turned on, it would be nothing. Or maybe it would be a monster. At the end of last year, when I was told I had lupus it was like the light had been turned on, and there was indeed a monster in the room. But at least now I could see it, and if I could see it then I could control it and maybe it wasn’t such a big monster as I’d originally thought.

I realised the reason I was so upset after this appointment was I felt like the light had been turned out again. It was back to being just a shape in the room, which was maybe a monster I knew, or maybe “something else.” “Something else” really is quite frightening. “Something else” potentially puts more than one monster in my room. “Something else” makes me feel powerless especially when it doesn’t really feel like anyone is investigating to see what it might be.

Despite the anxiety that this produces in me, I don’t really think there is something else. I’m fairly certain that what I have is lupus, even if a clear-cut diagnosis can’t be made. So for the moment, the other monster in my room probably is just made up of fear, and anxiety monsters can be pretty damned scary if you let them.

I’m going to do my best not to let this one be.

Thanks for reading

Little Miss Autoimmune.

Collecting for Arthritis New Zealand

Yesterday I spent a couple of hours collecting for Arthritis New Zealand. It was far more tiring, but also far more enjoyable than I thought it was going to be.

So many people stopped and told me their stories. People of all ages either had a form of arthritis themselves, or had loved ones who did. They all gave so generously, donating handfuls of coins and a huge number of people gave $5, $10 or even $20 dollar notes. Many people were apologetic over not being able to give more, but every little bit makes a difference. By the time I dropped the bucket off at the bank, it was almost too heavy for me to carry.

One of the stories that really stuck with me was a young mother who showed me her very painful-looking wrist, and said that she was in the process of getting a diagnosis of Scleroderma. She said that Arthritis New Zealand had been incredibly helpful to her, which was great to hear.

Many other people who were not affected by arthritis themselves, stopped and asked me my story. Though many still asked what I’d done to my leg, others realised straight away my reason for having Molly-Stick and for collecting for Arthritis New Zealand. It was interesting to note that everyone had heard of lupus (possibly from watching House!) but no-one had ever come across Psoriatic Arthritis before. One man asked me how they treat arthritis in young people, and when I said chemotherapy he said “But that’s only for lupus, not for other types, isn’t it?” so I think it turned into quite an awareness raising exercise as well.  

I ran into a few people I know, and one woman gave me a coin because she thought she’d recognised me as Mike’s daughter (I did tell her he’s not my dad.) I did have to laugh, as a couple of people I know avoided eye contact and quickly walked away (it’s okay, I wouldn’t have guilt tripped you!)

My tremors and joints were not a huge fan of the standing still for so long, so I did get rather shaky and probably looked like I was doing the needs-to-pee dance, as I shifted around trying to keep my joints from locking up. The bucket did end up on the floor at one point, as my hands decided they weren’t having any more of it, but some lovely ladies helped me out picking it up and reclaiming the coins that had made a break for freedom. Another very nice guy offered me an energy drink, to keep me going, however I decided that would probably not be the best idea seeing as I was already shaking!

As I said, the day was quite tiring. I was supposed to be collecting from 1pm-2pm but it wasn’t until about 2.30pm that I realised the time. As there was no-one available to collect after me, I decided to stay until 3pm as there were still many people donating. In fact, it became rather hard to leave as people were still coming up to me with coins as I was packing up to leave. I had to go into town to get a blood test straight after, then managed to fall asleep sitting upright in a café! 

Thank you so much to everyone who donated, or came up and talked to me. Thank you too, to all the staff at New World Thorndon and Arthritis New Zealand who did such as great job of organising all of the collectors.

Little Miss Autoimmune

Sick-Cycle Carousel

You go through many cycles with chronic illness. Flares. Remissions. Good days, bad days, round and round and round.

I knew posting about things being good was a bit of a risk. There’s always part of me that thinks The Universe is going to go “Oh, you thought things were going to stay good? Haha, nope! Here’s a flare.” And that did kind of happen a little bit after I posted about how well things were going.

A couple of days after writing this post, I had my monthly blood test and my labs were out. Considering my labs are usually normal even when I’m badly flaring, it was a bit worrying. Since then, most of the things that had got better stayed better (Yay!)... but some other new symptoms popped up*. And so the cycle goes round and round and round.

Another cycle that will be familiar to many others with chronic illness is the grief cycle.

I’ve been struggling quite a bit with dropping things lately. I’m not entirely sure what’s causing it – my guess would be a combination of pins and needles, tremors and raynaud’s. Whatever it is, I’m decidedly more fumbly that I used to be. And my poor dishes have not been faring particularly well! Last count, 1 glass, 2 bowls, 1 mug, 1 dinner plate and 1 side plate have fallen victim to my hands. Plus a few other things are now either chipped, or have learned to bounce. Even when the crockery itself doesn’t break, just having the contents go everywhere can be annoying enough. I really wasn’t sure whether to laugh or cry when I dropped an entire glass of almond milk into an open drawer. Don’t be fooled by the almond part – after a couple of days, it smells just as bad as normal milk!  

So, after being upset about this for a while, I got this pretty awesome drink bottle (or three of these drink bottles to be more accurate.) And on the day I bought these, I was really happy, as I now had a solution to this problem. But then I had to grieve for a while, because finding a solution made me think again about the fact that there was a problem in the first place.

Similarly, I’ve been avoiding ordering drinks in cafes, or having anything other than water out of my bottle at other people’s houses, due to not wanting to make a mess or break other people’s stuff. I was thinking about this today, and I realised I could easily ask café staff or friends to put drinks in a mug or paper takeaway cup. I might get a few awkward questions as to why, but with Molly-Stick around I get awkward questions anyway.  It’s not a perfect solution, as even with the handle I do sometimes drop mugs, and takeaway cups are hardly environmentally friendly, but it’s a solution none the less. And so again, I had to grieve about the fact that I had a problem that needed a solution.

Remembering that it is a cycle does help. Bad days suck, but good days are part of the cycle too. And the cycle of grief, it is a bit of an emotional rollercoaster to be upset by both the problem, and the solution to the problem, but I’m kind of an emotional person. If I wasn’t getting upset about that, I’d probably be crying watching Shortland Street, or something equally ridiculous (by the way, totally cried watching Shortland Street last night.)

There’ll be good days, and there’ll be bad days, and I’ll cry about stupid things. But sometimes I’ll laugh about stupid things too. With the almond milk, I settled on laughing.

Thanks for reading

Little Miss Autoimmune

*I will post properly about this at some point, but still a bit too close to it to talk properly about it yet.

Paying it forward (with ninja baking!)

Quite a while ago, I posted about the random acts of kindness members of the public had shown me. I'm a big believer in paying it forward, but I'm not always sure of how to go about it.

Recently, I read about The Sisterhood when a friend posted the link on facebook. After reading about the ways other women in New Zealand were joining together to commit random acts of kindness, I decided I wanted to be a part of it.

This weekend, one of my friends and I (along with many other women around the country) took part in some ninja baking. I can't say we were the most stealthy of ninjas - Molly Stick isn't exactly built for it, and the sheet of paper with directions on kept escaping in the wind meaning mad dashes chasing after it. The mad dashes were of course made by my friend, not me - Molly Stick isn't really built for that either!

Even with our less than stealthy ninja-ing, at the end of the day we had delivered brownies and cupcakes to the mail boxes/doorsteps of three deserving women, who had been nominated by their friends. We don't know these women, though I did find out later that the two women I had nominated had also received baking from another ninja baker. (Yay!)

This was a great experience to be a part of. If you're in New Zealand, please check out The Sisterhood page and consider taking part in the next random kindness adventure.

:-) Little Miss Autoimmune

I'm doing a happy dance!

I had an eye appointment today – the result: there’s no inflammation in my eyes, no sign of problems being caused by medications, and while my left eye is still quite dry, my right eye is fine. Even better, my vision has improved and my eye muscle control is back within the normal range. Yay! It was so nice to go to see a medical professional, and have them tell me things were good!

Things have been better lately, in general. My new medication combination kicked in about a month ago. To be honest, I’d kind of given up hope that this would work. I knew it would take a while for the new med to start working, but when it had got to three then four and five months on it, and I was still getting worse rather than better, I figured it just wasn’t going to happen. Around the six month mark, I started to notice some improvements.

For most of this year, things have been pretty shaky (no pun intended) in terms of my health. There were days, weeks sometimes, where the tremors were so bad I couldn’t get around the house unassisted, and even when my limbs weren’t actively shaking I still felt pretty unsteady on my feet. There was more than one occasion where I lay on the floor, unable to get up after falling, and many times where I got stuck on the couch because my legs had gone numb and I couldn’t stand. There have been many days where I couldn’t leave the house because my guts were too messed up, and many, many days where one nap just wasn’t enough. There’ve been days where my eyes have been too blurry to do anything useful, and days my speech has got so slurry and word-salady it’s hard for people to understand me.

Things are by no means perfect now. My bad days are still pretty bad – still plenty of shaky legs, messed-up guts, word-salad and nap-taking – but on the good days I feel far closer to normal than I have in months. And there are far more good days than there used to be too.

On Monday I did a yoga class. It wasn’t entirely a success – my shoulder has been hot and inflamed since, and a few of my other joints are complaining loudly, but I did the whole class! That’s a long way from not being able to get off the couch. As I walked home from the class – yes, I even walked to and from the class, which would be FAR more impressive if it wasn’t in the building next to mine – this song came on my ipod. I think that was the universe’s way of reminding me to reflect and be thankful for how far I’ve come. Thanks Universe!  

Thanks for reading

Little Miss Autoimmune

Can you push through?

I had one of those days today, where you relive and rehash arguments from years, and I mean literally YEARS ago. In this case, it wasn’t even really argument I was relieving, it was one of those “this person said something I really didn’t agree with, but I didn’t have an answer to coherently explain why I didn’t agree with them, so instead I said nothing and now five/six years later am still trying to come up with what I should have said” situations.

Basically this is what happened:

I was running a training about chronic pain, and part way through one of the attendees interrupted. He started talking about people who train in martial arts, and who push through the pain. If they can do it, why can those of us suffering from chronic pain, just “push through.” Aren’t we just being too soft on ourselves? Aren’t we just not trying hard enough?

I didn’t know what to say. I couldn’t think of a way to coherently explain the flaws in this argument, but fortunately as I struggled to come up with an answer, one of the other participants in the training (who also happened to be a good friend) came to my rescue and redirected the discussion.

Today, I finally figured out what I should have done.

Now, before I continue, I’d like you all to try something for me. Raise your arms above your head – right up so that they’re touching your ears, elbows straight. Now hold them there, while you keep reading.

This is an argument I’ve come across a few times. The idea that you can “push through” pain. Yes, in some situations this is true – martial arts or other sports training, getting a tattoo or piercing perhaps, getting yourself to safety after an accident, and I’m sure other situations that I can’t think of right now. The difference with all of these situations is that there is an end to them. In my younger, pre-sickness days I did play sports, and while I don’t have any tattoos I have had a few piercings done. Yes, you can hold it together even if it’s hurting when you’re training, but you can be damn sure that as the pain starts to get to you, you’ll be watching the clock waiting for it to be over. Not only have I had piercings myself, but I’ve watched other get theirs, and I’m fairly sure the phrase most often said by piercers is “almost done” indicating that people are holding on for the moment that it’s over.

How are your arms feeling? Have your shoulders dropped down a little? Are your elbows bending a little? If they are, get them back up there! I didn’t say you could drop them! Could you keep them up there for another five minutes? How about another hour? How about THE REST OF YOUR LIFE?!

Maybe you could keep them up there for an hour, but in that last five minutes you’d be watching the clock, and as soon as that hour was up you’d drop them with a big sigh of relief and satisfaction. Maybe you could keep them up there for a day, if you got to take breaks and stretch occasionally.

Unfortunately, you don’t get to take breaks from chronic pain. There’s no end point in sight either. People with chronic pain do “push through” everyday, but it’s a different type of pushing through. We have to push to get out of bed, feed ourselves, and all those other daily tasks that healthy able-bodied people can take for granted. As an able-bodied person, you can’t decide what is or isn’t possible for someone living with chronic illness. If someone tells you they can’t do something, there’s no point telling them they should push themselves, because most likely they already are.

If you haven’t already, you can drop your arms now. Feels good? Don’t take that feeling for granted.

Thanks for reading

Little Miss Autoimmune

Childhood Asthma Returns

Unfortunately, it’s time to add another Little Miss character into the mix. For those of you who have no idea what I’m talking about, back when I first started this blog I made Little Miss/Mr characters for each of my autoimmune disorders. 

Mainly this was just an excuse to play with paint. Behind it though, was the idea that if I was able to find humour in something as bleak as a list of diseases, I could find humour in just about anything, and if I’m laughing, I cope better. Simple as that.

Today, I went back on asthma medication.

I had asthma very badly when I was a child, but I’ve been symptom free for over ten years. So much so, that when I was searching for an inhaler over the weekend, I couldn’t find one that hadn’t expired in 2002! A trip to the doctor today confirmed it is indeed my asthma returning. I left with non-expired reliever and preventer inhalers, and, after a discussion about the difficulties of using inhalers with bung hands, a spacer.

Now, seeing as asthma is an autoimmune disease, I bring you Little Miss Asthma:

Last year, when I got the diagnosis of SLE, I wasn’t feeling particularly in the mood for humour. In fact, I wasn’t really in the mood for much other than lying on the couch feeling sorry for myself. Subsequently, a Little Mr Lupus character did not get created.

Here he is now though. He has a hat. He’s jaunty.

Thanks for reading

Little Miss Autoimmune.

Coeliacs and other stuff

The other night I was ordering pizza, and when I requested a gluten-free base, the guy asked me if I realised the side I had ordered contained gluten. I didn't - I'd wrongly assumed it was gluten free, so I thanked him for letting me know and changed my order.

He replied: "Yeah, I make a point of telling people, because otherwise you might get a sore stomach but just think it was your women's problems."

Honestly wasn't quite sure how to answer that.

It's really awesome that this guy is looking out for people with allergies, but for the record, Coeliac Disease and menstruation - not that easy to confuse.

There are a lot of misunderstandings out there about Coeliac Disease and about gluten intolerance in general. This is the first time I've had anyone confuse it with "women's problems" but there is confusion none the less.

This is my understanding of the differences.

Firstly the names - "Coeliac Disease" "Coeliacs" and "Celiacs" are all referring to the same disease. I think Celiacs is an Americanised spelling, but don't quote me on that. I mostly use "Coeliac Disease", just because that's what's printed on my Medic-Alert bracelet, but they are generally used interchangeably. 

Coeliac Disease is an autoimmune disorder. In an affected person, their immune system has identified gluten - a protein found in wheat etc. - as a disease, and therefore responds to the presence of gluten by attacking it and in the process the person's gut is also damaged.

As far as I know, a gluten intolerance is not autoimmune in nature. My understanding is that, similar to intolerances to other foods, the problems occur when the body is unable to digest the gluten resulting in stomach upsets and, in some cases, other symptoms.

For both, the treatment is the same - avoid gluten.

I think sometimes those of us with Coeliac Disease or gluten intolerances get a bit of flack for being difficult or "picky". Much of this, I think, has been down to a trend in recent years of people going gluten-free because they think it's healthier. In a lot of cases (but not all!) gluten-free substitutes are higher in fat, calories and sugar, so if you don't have an intolerance or allergy, I'm not quite sure it fits the bill of "healthier". However, that's just my opinion and not in any way intended to be taken as medical advice. If you're thinking of going gluten-free, whatever the reason, that's for you and your doctor/dietician to decide.

Eating a gluten-free diet is not a choice for me, nor is it a case of wanting to make eating out more complicated. In the past, when I've accidentally eaten gluten, I've been so ill I've lost five or six kilos in a matter of days. I found out I had Coeliac Disease ten years ago, back when all gluten-free substitutes tasted like sawdust. Believe me, if it was a choice, I wouldn't have done it!

Thanks for reading

Little Miss Autoimmune

No-Handshake Awkwardness

Like many people with forms of autoimmune arthritis, I find it difficult to shake hands. The joints in my hands are often swollen and painful, so if someone goes for a firm job-interview type grip it’s likely to be excruciating for me. I have Raynaud's phenomenon, which mean I wear gloves or mittens all the time and somehow that just seems too much like shaking hands with a sock-puppet. Added to that, I walk with a crutch on my right-side, so if I’m standing I’m going to have to juggle crutch, bags and balance issues to be able to greet you.

I don’t expect anyone to be psychic. Even if you know someone has autoimmune arthritis, that doesn’t necessarily give you an idea of whether they will or won’t shake your hand, as it affects people in different ways. This can sometimes lead to some awkwardness, when a handshake is refused. Of course no-one wants to be left hanging, so I’ve compiled a handy list of appropriate and inappropriate ways to deal with the situation.

Appropriate Responses

• Carry on as if nothing has happened

This is really the best way to go. It’s not really a big deal, and the quicker you move on the quicker the awkwardness goes away.

• Acknowledge the awkwardness

If you don’t feel you can just move on, acknowledging the fact that the situation is a bit awkward, and then moving on, is a good way to go. 

• Laugh

Not at the person! Never at the person. But if you can all laugh when you feel uncomfortable, it breaks the tension and all is well in the world again.

Inappropriate Responses

• Insist on shaking hands

If someone is refusing to take your hand, whatever the reason, don’t push them. Often if the issue is pushed, I feel I have to relent and shake hands. This may seem like it makes the awkwardness go away, but it will likely cause me pain which will result in me avoiding you in future.

• Punch the person

Sometimes you might want to try and find an alternative to shaking hands. There are some alternatives that are suitable – waving, a gentle pat on the back, a hug (depending on how well you know each other!)

Some things will depend on the person and how their joints are affected. A high five or fist pump may be okay (as long as it’s gentle) or for some people this may be even worse than a handshake. If you’re not sure, ask. 

Then there are other alternatives that are never a good idea – punching people hard on the shoulder for example (yes, someone really did this and yes they did then have to catch me when I nearly fell over.) FYI, people generally don’t like to be punched under any circumstances, but if you’ve just met them and they’ve just told you they have a chronic pain condition, this is a very bad idea and you’re likely never to see them again!

• Bring it up repeatedly/apologise repeatedly

You don’t really need to apologise in this situation. As I said, I don’t expect people to be psychic, so I’m not going to get upset that you didn’t guess that I don’t want to shake hands. However, repeatedly drawing attention to it, either by apologising or just making comments/jokes about it can get frustrating. There’s only so many times you can say “it’s fine” or fake-laugh before you start to feel silly and embarrassed. The quicker you move on, the better.

• Imply the person is germ-phobic and/or racist

This is a sure fire way to make a situation more uncomfortable! Generally if you make this kind of comment, you will get a stunned silence in reply as the person tries to figure out whether you’re serious or just have a dark sense of humour. I think the time this happened to me, it was a case of weird sense of humour, but I felt horrible about the possibility that they really were offended. In general, try not to take offence about the fact that someone won’t shake your hand. It’s not about you – a greeting is just not worth that much pain.

- Little Miss Autoimmune

Open letter to parents of sick kids (from a now grown-up sick kid)

Dear parents,

First and foremost, you are doing a great job. You may think no-one sees how hard you try to make things better, but your kids do and they love you for it more than you can know, even if they don’t say it.

The following are not criticisms by any means. They’re just some things that I remember from being a sick kid, that I wish I could go back in time to say to my parents. I’m not a child-psychologist or anything impressive like that, so if you don’t agree with what I say, that’s okay. It’s just my opinion really, and you don’t have to agree with it at all. 

1)      Your child doesn’t want you to feel guilty

Many parents of sick kids feel guilty. Some site genetics as the reason, or choices they made for their children when they were babies. Whatever the reason, your child won’t want you to feel guilty about it. In fact, if they knew how bad you felt, they would probably feel guilty that you feel guilty.

You cannot change genetics. We all have them, and if you trace them far back enough, we all have hidden illnesses in our family trees. This is out of your control, and therefore not something you need to feel bad about.

The choices you made for your child were done with the best intention. Whether you vaccinated or didn’t. Whether you picked them up when they cried, or let them settle themselves back down to sleep. Whether you breastfed them or not. There is no definite evidence as to what causes autoimmune arthritis diseases, and at times either choice will have been thought to be a possible reason. The time spent wondering if this or that caused it, is entirely speculation, and to quote Baz Luhrmann “about as effective as trying to solve an algebra equation by chewing bubble gum.”

Your child has probably not thought about any of these things. If they ask you why they are in pain, or why this happened to them, they are most likely not really looking for an answer. It’s quite likely that they are just communicating to you that it hurts, and that they don’t like the fact that they are sick. They know that you already know, but they still need to be able to tell you.

When they’re older, and question whether genetics or environmental factors the cause of their illness, they won’t do it with blame. They will see the good intention behind the choices you made, and love you for that – not ask you to feel guilty.     

2)      Worry and anger sound similar to kids

It’s absolutely natural to be worried, when you have a sick kid. It’s also perfectly normal to be angry some of the time. Sometimes these sound the same to kids, though. They won’t always be able to tell the difference between “your voice is rising, and you’re frowning because you are so worried on my behalf” and “your voice is rising, and you’re frowning because you are angry at me.”

If you notice that your child reacts as if you have told them off when you are worried, it may be that they are interpreting your worry as anger. Don’t feel bad about this. Every parent, whether they have a sick kid or not, will have this misunderstanding at some point.

If your child is old enough to understand, have a conversation about the fact that worry and anger can sound similar. Explain that you’re not angry at them. Your child may be able to tell you what they’d like you to do or say instead, or you can talk about ways for them to understand the difference between worry and anger. There may be something you can say or do to make it clear for them.

When you’re stressed out it’s hard to think about, let alone change, what your face and voice are doing, but having a conversation about it can help stop it being misinterpreted.

3)      Your child will probably still rebel

Unfortunately, having a sick kid doesn’t give you a free pass on rebellion. Your child will still have all those pesky hormones, and that need to assert their individuality, just like every other teenager.

They may do this in the average way – alcohol, boyfriends/girlfriends you don’t approve of, sneaking out. Or they may start to rebel in a way that is closer to their world of being ill. It may be that they want to be in charge of their meds, and the choices about those. They may reject any suggestion you make, just because you made it.

There’s no simple fix for this, just as there’s no simple fix for the average child or teenager rebelling.

Let them be responsible for their meds if it’s possible to do that. They will need to learn to handle this themselves, and make choices about them, at some point anyway. Keep an eye on it, but try not to intervene unless you notice something of big concern.

If they reject your suggestions of what will help, make the suggestion but don’t try to convince them of it. Even if they say no initially, if you’re not persisting they have nothing to fight you on. They can make the decision themselves, and come back to it. If you argue about it, it will be harder for them to change their mind (or admit that they’ve changed their mind) but if they are able to say no once, then come back to it later on, there is no shame in it for them.       

Mostly what it boils down to, is love them, and keep them safe. Parents of sick kids have the hardest job in the world, and when the kids are grown up, they will look back and understand and appreciate it all.

Yours Sincerely

A (now grown-up) sick kid 

Little Miss Autoimmune  

I wrote this as a resource for World Autoimmune Arthritis Day

IAAM has established World Autoimmune Arthritis Day (WAAD), to be held annually on May 20^th, online and during all time zones, making it a 47-hour online event.  This Virtual Convention will unite patients, supporters and nonprofits from around the globe, inviting them to participate in both live and on-demand presentations, scheduled live chat sessions, surveys, live Call to Action posts and access to an online library of downloadable resources that can help them and their supporters in managing their diseases. Thus far, WAAD is registered on 16 health calendars internationally and has already received nonprofit support from over a dozen organizations, including the American College of Rheumatology, the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation and Lupus UK.  As the official Host of this historic event, IAAM invites YOU to be a part of it too. Best of all?  It’s FREE to register!

*IAAM is the official Host and Event Coordinator of World Autoimmune Arthritis Day.  www.IAAMovement.org

Find the WAADwebsite here

Register for WAAD here