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