Body Image Part Two

A while ago, I blogged about the reactions people have to the weight-loss I’ve experienced with my diseases. In the year since I posted this, my stomach problems have gotten considerably worse, and I have continued to loose weight. In the last six months alone, I have lost around 15% of my body weight.

I get a lot of comments on this. The comment I hate the most “It’s good to see you looking so healthy.” What this actually means is: “it’s good to see you looking thin.” If you are reading this, please understand there is a difference between the word “Healthy” and the word “Thin.” Please try not to use them interchangeably, unless you are absolutely sure that this is the case.

It’s hard to explain to people why this is a problem. I’m sure many people would think loosing a substantial amount of weight without having to put any effort in would be a dream come true. I was quite overweight to start with, and so from many people’s point of view, this is a good thing. Though I am considerably smaller than I was, I'm not actually underweight, so from the outside I probably do look healthy.

I’ve made a point to react to these comments with an explanation of the fact that this weight loss is in fact not healthy. I’ve refused to accept compliments that include mention of my weight, nor any praise about the weight loss. This reaction baffles people. They cannot understand why I don’t just accept their comments. They often become more insistent, assuring me it doesn’t matter that I’m sick because I look so good now.

It’s an effort for me have these conversations. It would be so easy for me to just say “thanks” and let them think this is a good thing, but I don’t deserve praise for this. Loosing weight to improve your general health is usually something people have to dedicate time and effort to. That hard work (if done healthily) does deserve praise, but I haven’t done any of it. I strongly feel that if I don’t refute these comments, I am contributing to the body-image problems so so many people struggle with. If people believe that my experience is “worth it” it’s not a big leap to saying that recreating that experience with a box of laxatives or intentional vomiting is also “worth it.” It’s not. It’s dangerous, and no-one should ever be made to feel so bad about the way they look to think that this is a solution.

This is a hard post for me to write. When I posted about my weight the last time, I was very clear in how I felt. In the last few months, I’ve felt my own body image getting distorted. It takes me longer to get ready in the morning, as I find myself standing in from of the mirror feeling unsure of myself. I find myself plucking at my stomach and thinking “if I just lost a little more.” I’ve had thoughts of not wanting to get better, because then I’ll regain the weight, and that little voice creeps in saying it’s “worth it.”

It is not worth it. I saw my GP on Tuesday, and she was very concerned by the symptoms I described. She immediately referred me to a gastroenterologist, and said it was important that I go privately, as the hospital system will take too long. In fact she was baffled that my rheumy hadn’t done referred me already, but that’s another story. In the past she has celebrated any weight loss with me. This time, she could tell as soon as she saw me that the weight loss was not normal.

This weight loss comes at a high price. My hair is falling out, my skin is gross, and I have to plan my days around the times I know my stomach will be at its worst. Sometimes it changes its mind, and I am running back and forth to the bathroom all day, unable to leave the house. I often wake several times a night because my stomach hurts, and I get hot flushes and dizzy spells every time I eat. Most of all, I feel really really sick.

For me, feeling good is more important than looking good, but I realised something significant the other day. I actually didn’t feel bad about how I looked before anyway.

Thanks for reading 
Little Miss Autoimmune

Hair Loss

Some people's furniture is covered with cat or dog hair. I like to go a different route....

My hair is falling out again. After years of going through periodic hair-loss, I've got in the habit of sticking the loose hair to the shower walls, or in this case the back of the shower chair, as a way to stop my drains getting too clogged up.  I don't really think about it too much - once it's dry, it goes in the rubbish bin and I forget about it - but when I came back into the bathroom a couple of hours after having a shower this morning, I was surprised to see just how much had come out today.

I'm constantly picking bits off my clothing, and there's always a fair bit left on the couch or pillow whenever I've been sitting or lying somewhere. I've taken to wearing my hair up, as the temptation to run my hands through my hair leaves me with a handful of loose strands. For the first time, I've actually found small bald patches, as I seem to be loosing more from the sides of my head than the back.

I'm not really bothered by this. I am quite glad I decided to donate my hair, as I think this would be really disturbing if the strands were four times as long, but even with the bald patches, my hair has always been so thick, you can't actually tell the difference unless you're examining my head at close range.

I wanted to post this, because hair loss is one of those things that people don't really get about autoimmune disorders. I remember having someone say to me: "How come you're loosing your hair, if you're not on chemotherapy for cancer?" It kind of one of those questions that's hard to answer. The doses of chemo used for autoimmune disorders are significantly lower than those used for cancer, so they don't necessarily cause hair loss for everyone, but they can still have some effect regardless of what diagnosis you're on them for.

At the moment, I'm not quite sure what's causing the hair loss for me. I have recently upped my methotrexate dose, so it could be down to that, but I've also been flaring quite badly, so it could be that my body has decided to shut down anything of low priority, such as hair production, to conserve resources. Either way, I'm hoping it settles down soon. At least so I don't have to vacuum so much, if nothing else.

Thanks for reading,
Little Miss Autoimmune   

The Art of Not Falling Down

The other day I watched this video of author Chris Morphew  learning to skateboard. I didn’t click on the link hoping to learn any great life lessons – or even how to skateboard. I just clicked on it because Chris’ videos are usually pretty funny.

And this one was no exception. I laughed a lot, but some of the things he was saying resonated with me, and I wasn’t quite sure why at first.

The whole theme of the video is Chris showing off his signature skateboarding more The Don’t Fall Off. At one point in the video he says: “The Don’t Fall Off – it’s more like a lifestyle choice than a move. Even when I do fall off, it’s kind of I achieved The Don’t Fall Off, if I have the right attitude.” Now, this made me laugh as I’m pretty sure he was just saying this to cover the fact that he’d fallen off the board, but at the same time the sentiment rang true with me.

I never really had the inclination to learn to skateboard until after I got really ill, and things as simple as walking in a straight line became a challenge. I remember feeling at one point that I had missed my chance to try things like skateboarding while I was healthy, and that was upsetting even though I’d never really wanted to do them in the first place. Sometimes I think maybe some day I could still try something like this. But then I remember that disability aside, I’m just totally uncoordinated, and once injured myself flying off an Ab Circle Pro (both hilarious and painful, so totally okay if you’re laughing right now!)  

Sometimes it feels like The Don’t Fall Over, is my signature move, and the biggest feat I will ever manage. Then sometimes it feels like I can’t even do that.

Just before Christmas, I had kind of a bad fall. I wasn’t hurt badly, other than winding myself by hitting a chair arm on the way down, but I landed in an awkward position and couldn’t get up again. I had to phone my dad to come rescue me in the end (thank goodness for cell phones!) It was the first fall I’ve had in a while, but there have been a few other near misses recently and it was enough to make me decide my current treatment plan just wasn’t working.

It felt like a step back at first – I’d gone from coping reasonably well, to not even being about to master The Don’t Fall Over. But I think the idea of “it’s kind of like I achieved The Don’t Fall off, if I have the right attitude” is very true. Yes, I did fall down but I didn’t fall apart. I knew what I needed to do in order to try and keep my health stable, and I still managed to keep on top of all the personal and work things I needed to do.

Even if I am falling over a bit more frequently, I’m still smiling and so I’ve got the attitude of staying on my feet, even if I'm technically on the floor.

I don’t know Chris personally, though I have read his books and did meet him briefly when he came to Wellington as part of the Storylines festival which I was volunteering at.

I’m pretty sure he didn’t intend any of this to be the hidden meaning behind his video about skateboarding, but the message was there for me when I needed it anyway. So thanks Universe (and probably thanks Chris too.)

- Little Miss Autoimmune.   

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