Flares, Fears and The Future

Life has been... too much recently. Too fantastic. Too overwhelming. Too awful. Too scary. Just too much.

I've had some really awesome things happen lately. Things that made me feel really good, and really proud of myself. I've met new people and had some great opportunities come my way, and for the first time in... well possibly forever... I've felt like yes, I know what I'm doing. Not only that, I'm good at what I'm doing. I've really liked myself, and felt happy. Not happy but... or liked myself except for... 

But the thing is, all of the big opportunities and good things happened at the same time. Which meant I was pushing myself to keep up with them all. Which was fine - good actually, because in a way that made me feel even more awesome. "Look at me go!" I was thinking. "No disease is going to hold me back!" And it truly wasn't. Though even before things got busy, my body had been telling me things weren't right. I had one week where I kept falling asleep in accidental naps every time I sat down. I pretty much lost an entire day at one point. 

And then all the deadlines etc. fell at around the same time, and true to form I didn't flare in the middle of the stress, because the adrenaline was carrying me through. I wasn't having accidental naps anymore, but now I wasn't getting enough sleep either. Pain, not being able to relax, and a few other symptoms were keeping me up all night. 

Naturally, I flared the minute the stress stopped. The day I handed in my play, my arms doubled in size with soft-tissue inflammation. By the evening, my joints had joined the party, and I could barely open my mouth as the side of my face had formed a lump where my jaw joint was swollen, and my other joints especially my spine were screaming in pain. Then the muscle spasms and tremors kicked off, and I found myself teaching a class, but not able to get up from the chair I was sitting in.

But I was still happy. I was still pleased with all the good things, and the fact that I was coping so well with the bad ones. It was terrifying when I realised I couldn't stand up, but I kept calm, came up with a plan for what to do about it and successfully put it into action. Even though I was getting sicker by the day, I was managing to keep on top of everything. 

When you're chronically ill, you're so often told to be grateful, and it's so annoying when other people say it. It's said as if it's something comforting, but all it does is make you feel guilty for feeling bad. When it comes from inside you, though, and not from someone else putting it on you, it can actually help. I was so thankful for the amazing things and people in my life - so I couldn't eat solid food? Look at how many yummy things I could turn into soup or smoothies, and really just having food at all is something to be thankful for isn't it? So I couldn't walk? I had amazing people willing to give me lifts places, or offer me advice and company on facebook. So I was in a sh**load of pain? How lucky was I to have had my joints be in remission for the last couple of years! This level of pain used to be my life all the time. And who could forget that the only reason I was flaring in the first place was that I'd just had a whole load of awesome things happen? I had nothing to complain about.

Then 4am on the Friday morning, I woke up in a lot of pain. When I sat up, I started vomiting, then fainted, and it kind of went downhill from there. Basically every time I was upright, I passed out, then vomited when I woke up - usually all over myself. In the morning proper, my dad took me to the doctor, but it was a real struggle for me to stay conscious long enough to get to the car, then when we got to the doctor's I collapsed in the parking lot and had to be wheeled inside, where I proceeded to vomit and pass out some more. I couldn't even keep water down, which meant I was dehydrated and my pee looked like a cup full of Fanta.

Believe it or not, I still felt happy. There were points, where I was screaming inside my head "This has to stop! I can’t do this anymore!" and I did start to cry because I felt so bad about vomiting all over the floor (and possibly one of the nurses) But I still felt really grateful for everyone taking care of me, and for how nice they were being. I was thankful I’d made it through all the deadlines before this happened, and everyone was assuring me I would be feeling a lot better soon. I was. They gave me a shot of steroids, and the wonderful thing about steroids is that though they have harsh side-effects, they work well, and they work fast.

So, with my newly-mostly-behaving steroid-filled body, I carried on. There were no more deadlines, so I wasn't pushing myself so hard. A good thing since I'd managed to pull several muscles during my escapades. I was already planning the next projects, but I didn't feel quite so good anymore. I started to feel unsure of myself, and even the simplest decisions like "do I want to talk to somebody on the phone tonight" felt too hard, and motivating myself to do anything was difficult. The things I had been looking forward to, didn't feel quite so exciting anymore.

For a while, I thought that I was feeling that way because I was actually unsure of the things I had coming up. But then I realised it had nothing to do with anything in the future. A lot had just happened, good and bad, and I hadn't had time for my mind to catch up. This wasn't a Pollyanna-type situation - I wasn’t forcing myself to feel positive, happy, or grateful, that's just, for whatever reason, what I was feeling. I kind of suspect I hadn’t really connected fully to what was happening, and had been living in a sort of pleasant denial. Then the reality of how sick I'd just been caught up with me. I remembered that no matter how well I manage things, I have a serious illness. While most of the time that's going to be difficult but do-able, sometimes it is just going to be scary and awful and there's no getting away from it.

I wrote the above about a week ago, along with several other posts which I’ve decided are too personal to post. The gist of them was basically that I ended up in quite a dark place for a while. I saw my doctor yesterday and she said it’s normal to feel depressed after a big health set-back. I felt like I was losing control of my body and it was hard for me to feel calm and positive about that, because it wasn’t an irrational thought. I did lose control of my body. My fears about the future, and the possibility of my diseases progressing were all brought to the surface, and it was hard to reassure myself when I knew that all of the things I was afraid of could easily become a reality. My doctor also pointed out that I’ve had some bad reactions to steroids in the past, and it’s likely they were influencing my mood. It’s also likely that my hormones were a bit out of whack and my Vitamin D dose was due.

The good thing was I recognised my thoughts were becoming a bit dire, and I sought help. I’m lucky enough to have friends and family who were able to be there for me, in person, over the phone, on facebook, and in some cases without even actually doing anything. Just in knowing that I could contact them and they would understand helped me. I’m still not back to myself, but I am feeling better, and my doctor is arranging for me to see a counsellor to talk through some of the fears this has brought up. I’ve been a little reluctant to talk through these issues in the past, as I’ve noticed many people’s automatic response is to try and reassure me that the things I'm afraid of won’t happen. This isn’t helpful, because it’s just not true. The things I'm afraid of may or may not happen, and I’m by no means saying I definitely think they will, but assuring me they definitely won’t is just an empty promise. What I need help with is not dwelling on those fears, not deluding myself into thinking nothing bad will ever happen to me.

Right now I am (mostly) in control of my body. I am functioning, and living a pretty good life. I don’t want to miss all the awesome things my present has to offer, just because I’m too focused on what the future may or may not hold. 

Thanks for reading,
Little Miss Autoimmune

Capable with a side of limitations

"J Hook" in Action

When I was asked to write a post on the topic of “A Day in the Life of an Autoimmune Arthritis Patient”, I have to admit my mind went a little blank. I didn’t want to write about a really bad day, because when I talk about the bad stuff, people often get the wrong idea. They expect me to be completely bed-ridden, or at least much worse than I am, so when they see me they find it hard to reconcile their mental picture with the one they see in front of them. But I didn’t want to document in detail a good day either, because that would give the wrong picture too, and it would then make it harder to explain to people why I can’t do certain things on certain days. 
 
The truth is, there is no typical day for me. I can be fine one day, and really not the next. But there are a lot of things I do every day – good or bad – that healthy people probably don’t. Every day I have to plan, pace and prioritise tasks, so that I can make sure I can meet all my responsibilities without letting anyone down or making myself ill, but Christine Miserandino’s Spoon Theory can explain that better than I ever could. Overall, there are a lot of choices I have make, that healthy people probably don’t and there are also a lot of tasks that I adapt to make easier, mostly without even thinking about it.

I think the fact that I do these things automatically, means that most people don’t even realise I’m doing them. It’s kind of like a duck swimming, peddling frantically underwater, while keeping up the serene, gliding appearance on the surface. I don’t think anyone would ever describe me as “serene” or “gliding” but I probably do manage to appear more capable and independent because I employ a whole lot of “cheats” to situations behind the scenes. 
 
This is by no means a comprehensive list, but here are some of the “cheats” I use to make my days both easier and more productive

·         I consider an electric can opener and electric mixer kitchen essentials, not luxuries, and I also use specialty tools like a jar opener and J Hook*. I don’t bother to try opening bananas, jars, tins, or plastic bags the normal way anymore. Plastic bags and jars can be opened with the help of a pair of scissors (to break the seals on the jar) then bracing the jar against your body, and a banana is most easily opened by cutting part way through with a knife.
·         I stand with my back against “push” doors, and shuffle backwards to open them, and I open “pull” doors a little way with my hand, then use my knee or elbow for more leverage to get them properly open. Apart from my front door, I don’t ever shut the doors in my apartment fully, so don’t have to turn the doorknobs to get them open. I also use my elbows and knees to close cupboards, drawers, and the oven door.
·         I cook big meals, so that I only have to cook once a week and have a supply of left overs for when I don’t feel well enough to cook, or just don’t have the “spoons” at the end of the day.
·         During applause situations, I clap my “good” right hand against my left forearm, because my left hand and wrist can’t do clapping.
·         I use voice recognition software for typing when it hurts too much, and I switch the buttons on my mouse over every so often, so I’m not over-using the same joints.
·         I keep on office “wheely” chair in my living room, which I use as an improvised wheelchair to get to my bedroom if my leg gives out before bedtime. Tip: if you ever have to do this it’s easier to sit on it and push yourself backwards with your feet, rather than trying to make it go forwards.
·         I use water bottles, or mugs with a large handle, rather than glasses which require a proper grip.
·         I always buy hand bags with an across-the-body strap, so I don’t have to carry them in my hands. When I do have to carry things, I tuck them under my arm, or loop the handles of shopping bags over my forearm.
·         I only ever buy pre-grated cheese, and pre-crushed garlic. They're just going to go mouldy waiting for me to use them otherwise. 
·         At night, I often fall going to or coming back from the bathroom. I used to fall right next to my bed, which was incredibly demoralising. I could tell, even in the dark that I was so close to it, but wouldn’t be able to pull myself up. So my cheat for this: if I’m past a certain point in my room and I start to fall, I don’t try to stop it but just propel the fall forward as much as I can. If I’m lucky, I land face down on the bed, and then I laugh about it a lot. If I’m not so lucky, I land on my knees next to the bed, but that’s still easier to pull myself up from.
·         I listen to music while doing a lot of tasks, because I find distraction is one of the best forms of natural pain relief, and I can cope better if I manage to keep my mind off the pain for longer.
·         I always aim to leave the house 25-30 minutes before my bus goes. On an average day, the walk takes 16 minutes, and on a really good day it can take less than that. But I have to prepare for the fact that until I start walking, I can’t tell for sure what type of day it is. This way, I don’t miss the bus, even if it turns out to be a really bad day, and if it happens to be an especially good day, there will probably be an earlier bus I can catch anyway.
·         I usually eat soup or smoothies for lunch, so my poor jaw joint gets a rest from having to chew too much.
·         I know where the lifts are in most public buildings. If there aren’t lifts, I make everyone go ahead of me on the stairs so that I can go as slow as I’d like to. Every so often there will be someone trying to be helpful, who will insist they don’t mind waiting. I’ve learnt to stand my ground, and make them go first, because no matter how much they don’t mind, I will still feel compelled to force myself to walk faster in order not to hold them up.
·         I use Molly Stick even on good days, just in case things go bad suddenly. This happens a lot, but Molly Stick means I can still get myself home or to a taxi safely.
·         When I stop at street crossings, I take the weight completely off one of my feet to give the joints on that side of my body a rest.
·         I wear wrist splints at night to stop the pain getting really bad while I sleep, even if my wrists don’t hurt when I go to bed. This gives me a better shot at a good night’s sleep, and functioning hands in the morning.
·         If I’m standing talking to someone, and I start to feel dizzy, I scrunch my toes up to try stop myself passing out. If it seems like my leg is about to give out while I’m teaching, I press my palm hard flat against the desk, and shift my weight on to the other leg. I can do this without alerting anyone to there being something wrong, and while still concentrating on what they’re saying.

This was supposed to be a short list, but the more I wrote, the more things I thought of. There are many, many more, but I think this is enough to give you an idea of the kind of things an autoimmune arthritis patient might do in their day, just to make it through.

Thanks for reading,
Little Miss Autoimmune

* a tool for opening pull tabs, found in disability supply shops.

Nothing is ever simple

I went to see my GP on Monday, as there were several issues I felt were starting to get out of control – the weird bulge growing on my forearm, the even weirder red painful dots on my skin, and the ridiculous number of coldsores I’ve had recently.

The weird bulge in my arm is, as I’d suspected, tendonitis (inflammation in the tendon sheaths.) It’s likely being aggravated by the fact that it’s on the side I use Molly Stick, and I’ve probably been typing/using the mouse a bit too much lately (bring on the voice software!) My GP suggested the best course of action would be to ask my nurse to give me a local steroid injection, to bring down the swelling and to stop it interfering with the function of my hand. I always get significantly worse for the first 24 hours after a cortisone shot, so I’m guessing the days after having it done I won’t be able to use Molly Stick, making life a bit difficult. My nurse is away at the moment, so fingers crossed the tendon will have un-inflamed itself before she gets back and I won’t end up needing it.

My GP also noted that there is some swelling around my joints, in addition to the soft-tissue inflammation I’ve been getting, which may mean my PsA has decided it’s tired of being in remission. That’s kind of upsetting, especially as I can’t take anti-inflammatory meds because I have gastritis (inflammation in the lining of the stomach) but I just keep reminding myself that I was incredibly lucky to go into remission in the first place. 

I’m pretty superstitious, so I was fairly sure that the coldsores were down to a combination of suppressed immune system and the fact that I tempted fate with this facebook status a while back: 

“Tubes of Zovirax are specially designed to disappear somewhere in your house, in between coldsores. Someday I will find their secret hiding place, but on that day I will probably not have a coldsore.” 

I’ve been getting them once or twice a week ever since then. My GP agreed that it is most likely down to the immuno-suppresant effect of the medications, and said I’ll need to contact my nurse to find out what I can and can’t do to support my immune system without it becoming counter-productive. It is in a round about way a good thing, because it means the meds are having an effect. But a little frustrating to find that my immune system is still over-achieving when it comes to attacking healthy cells and yet simultaneously becoming incompetent when it comes to fighting actual diseases.

When it came to the red dots, she said she honestly had no idea, other than to say it definitely wasn’t hives, shingles, an infection, or vasculitis (inflammation of the blood vessels.) All good to know, but it didn’t really get us any closer to what it was, so she got on the phone to my dermatologist. My dermatologist quickly added “a complication of the coldsore virus” and “a reaction to medications” to the list of things it wasn’t, but unfortunately, by the time I got in to see her, the red dots had all passed the point of being biopsy-able, so she couldn't give me a firm diagnosis of what it was. She did say, however, it’s likely folliculitis (inflammation of the hair follicles.) From what she told me (and a quick google search) there are a few different types of folliculitis, ranging from mild irritations to much more serious. The type I have is not caused by an infection or ingrown hairs, but by inflammation from the autoimmune diseases. To make things more complicated, the medication used to treat this kind can’t be used in people who have a positive ANA blood test, which I do (ironic when the fact that I am ANA+ is likely the cause of the inflammation in the first place!) Fortunately my dermatologist was able to give me a topical treatment instead, which should hopefully help to settle it down. 

When I mentioned the coldsores, she said that I may need to go on tablets for a year to eradicate the virus. I’m a little reluctant to do that, as I’m already on so many medications as it is, so I’ve said I will wait a while to see if they calm down on their own first.

So all in all, I’m feeling a tad –itisy at the moment. It feels at the moment like I’m not only fighting all of these diseases, but that they’re fighting each other, either making each other worse or complicating treatment options. I’ve never been a particularly zen person, but I do know that thinking like this, or getting upset and frustrated about it is just going to make things worse. So the other day I decided that any time a medical profession uses the words “Because you’re complicated...” I will mentally replace them with the words “Because you’re awesome...” Because I am.

Thanks for reading, 
Little Miss Autoimmune

And we’re back to lupus... I think

I had an appointment with my rheumatologist on Thursday. I wasn’t really expecting much to come out of it. I don’t mean that as a criticism of her, just that I was under the impression that I had no treatment options left. I wasn’t expecting that she would be able to do anything for me and I really didn’t think the confusion over the diagnosis was going to change.

Surprisingly, I was okay with this. I blogged a few weeks about the pitfalls of hope when it comes to believing illnesses will get better, and I think the opposite can be true. If your expectations are low, and you find a way to be okay with that, then anything above those expectations happening is a bonus. There were a couple of questions I wanted to get answers to, and I was really hoping that a cortisone injection in one of my fingers was a possibility, but other than that I was okay with nothing really coming out of the appointment.

It turns out the joint in my hand is too small for a cortisone shot. I realised afterwards that I wasn’t sure if my rheumy meant this is always the case with finger joints, or it’s just because my hands are unusually small for an adult (they’re the same size as my nine-year students’) but either way it wasn’t going to happen. Instead my nurse gave me an intra-muscular steroid shot. I’d mistakenly thought this wasn’t an option at the moment, as I’d got the time frame wrong as to how often you can have them, so it was a bonus to be able to have something that would quickly get some of my out-of-control symptoms back down to a more manageable level.

I was pleasantly surprised to find I do actually have a couple of other medication option still to try. My rheumy was at great pains to point out that a couple is not many, and as always there are risks with any medication, but given that I thought I had zero options left a couple is good news. I know very well that these may not work and, since I have to wait for some blood tests to come back before I get the go ahead to start, it may turn out not to be possible for me to even try. I’m not allowing myself to get too invested in the idea that these will help but, at the same time, they have more chance than nothing.

Then there was the diagnosis situation. During the appointment, I thought my rheumy had actually come to the conclusion that I didn’t fit any diagnosis clearly. I was pleased to find that I was fine with that. In the past I have unintentionally placed a lot of significance on the diagnosis, and all that has done is left me upset and confused. I cried when I first got the diagnosis of lupus, and I cried when the diagnosis went away again so clearly neither option was going to make me happy.

At the end of the appointment, my rheumy suggested of the medication options available we go with the one that works best for lupus, and she handed me a blood test form which had PsA and SLE (Psoriatic Arthritis and Systemic Lupus Erythematosus) written under clinical details. My nurse explained that sometimes people do have both running concurrently, and that that may explain why I’ve managed to simultaneously get better and worse on certain medications as they work differently with different diseases. I don’t really know if any of that amounts to a diagnosis. It sort of seems like it, but the last time someone actually said to me “yes, it’s definitely lupus” and yet later they were surprised when I thought I had been diagnosed with it, so I’m not making any assumptions.

The thing that I do know for sure, is that I was okay with it either way. I didn’t feel the need to cry, nor did I feel any relief or positive emotion about it either. The strongest thing I felt straight after the appointment was a desire to go buy some chocolate, but I think that was more down to the fact that I had the injection and four vials of blood drawn all within the space of about five minutes.

I think the reason I’ve placed significance on diagnosis in the past is that there was still a little part of me that felt maybe it would change something, and I was in a round about way still looking for that “better.” Of course I would still really really like it if things did get better – I wouldn’t be looking at new medications if I didn’t – but I’m doing my best not to hang everything on that. My new mantra is going to be: “Things are okay now, and anything else is just a bonus” and I’m going to do my best to listen to my own advice.

Thanks for Reading 

Little Miss Autoimmune

Move it... and sometimes lose it anyway.

I think every chronic illness patient has a phrase which they particularly dislike hearing. For some people “You’re too young!” or “But you don’t look sick?” really hit a nerve. Personally I don’t mind those so much. I think they come from a place of misinformation and while it can be irritating to hear them over and over again, it’s the not the person’s fault if they don’t know what they don’t know.

The one that really irritates me is: “Move it or lose it.” I dislike this, because I don’t think people have any idea what it really means, they just like parroting catchphrases and particularly like catchphrases that rhyme. I also dislike the fact that this is offered up as a piece of advice. For one thing, when it comes to autoimmune forms of arthritis yes, absolutely exercise is important, but you may still “lose it” anyway. Last week one of the joints in my finger stopped moving completely and has been locked in place since. It is somewhat swollen, so I’m hoping that maybe if the swelling goes down it will “unlock” but it could very well be stuck permanently from now on. I take pretty good care of my hands. They’re the only joints I consistently do any physio exercises for, and everyday life provides plenty of movement for them, but they are also the area of my body where I have lost the most range of movement and function.

When it comes to degenerative forms of arthritis (for which move it or lose it is most relevant) it’s still just a catchphrase not advice. It doesn’t explain what type of movement is helpful, and doesn’t do anything to address any barriers. When I hear this, the first thing I picture is someone swinging their joint wildly back and forth repetitively – that’s not a way to prevent arthritis; that’s how you give yourself RSI. It really should be “move it or lose it, but don’t forget to plan and pace!” But I guess that isn’t as catchy.

Perhaps you may think I’m being unfair – the phrase is just supposed to be the reminder and motivator not the sum total of the treatment plan. Unfortunately, I know from my mother’s experience that this isn’t always the case. When she began to have severe pain in her fingers and one of her joints kept locking, my mum went to the doctor who told her “It’s osteoarthritis. Move it or lose it.” and no, I’m not paraphrasing, that was word for word all he had to say on the subject. He didn’t even look at her hands. While my mum was at the time at an age where onset of osteoarthritis was more likely than an autoimmune form, I found it astounding that given she also had psoriasis, psoriatic arthritis in a close family member, and the joints affected were DIP joints (the end finger joints; most often affected in PsA.) that he wouldn’t at least investigate. I insisted Mum go back, and at the very least get some clear guidance on what exactly she should be doing. She was again dismissed with “move it or lose it” as her only advice.

Swollen DIP joint

(Distal interphalangeal joint)

Some months later, (after she had decided to retire as she was unable to complete parts of her job without full use of her hands) Mum saw another doctor, who actually looked at her hands, and it turned out she did not have osteoarthritis but a treatable condition. The treatment plan included complete rest of the joint for two weeks, so the “move it or lose it” had in fact been exacerbating the condition.

“Move it or lose it” is not advice, nor is it in itself a treatment plan. It would be like telling someone who has depression to “turn that frown upside down” in place of offering a referral to counseling. If you’re a medical professional, please realise that when it come to exercise it’s not the fact that we need to do it that’s confusing people. It’s the how and what to do that’s the problem. So if you’re still really keen on using rhyming catchphrases, then by all means say “move it or lose it” but follow it up with a referral to physio or at the very least a proper explanation and plan.

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

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.

My onset story

This is me, at age nine, just before my onset of Psoriasis and Psoriatic Arthritis.

When I was nine, my parents took me and my sister to South Africa – most of my dad’s family were living there at the time. Because some of the areas we were travelling to had a high risk of malaria, we had to be on anti-malarial drugs as a precaution.

We didn’t know this at the time – and chances are even if we had it wouldn’t have changed anything – but certain anti-malarial drugs can bring out Psoriasis in people who have the gene, but no current symptoms. I say knowing this probably wouldn’t have changed anything because my mother and I didn’t know that we had the Psoriasis gene. Even if we had – the risk of malaria probably would have outweighed the risk of what we initially thought was a minor skin complaint.

When we returned to New Zealand, I fell over and grazed my leg. That in itself wasn’t anything major – except that the wound never healed. Six months later, the area that had been cut had turned into a raised scaly patch. I soon found that any broken skin did the same. Being a reasonable active (and clumsy) nine year old, I was soon covered in similar patches. This was the onset of Psoriasis.

A few months later, I developed excruciating pain in my right thumb joint. As I was at school and spending a lot of time writing, it was assumed I’d developed RSI. After a few weeks of resting it, the pain got a little better. It never quite resolved though.

At the beginning of the next school year, the pain came back worse than ever and this time it wasn’t just in my thumb. All of the joints in my hands and feet were affected, and several of my larger joints were too.

I believe the anti-malarial drugs were the trigger for my Psoriasis and Psoriatic Arthritis. Ironically, these same drugs can be used to successfully treat other types of autoimmune arthritis.

As you can see from the photo, I wasn’t overweight at the time of my onset. Full disclosure – at times during my childhood I was overweight. When I was ten/eleven, I put on a lot of weight after large amounts of steroids for my asthma (those same steroids probably put my arthritis into remission, meaning my early teen years were relatively arthritis-free and I wasn’t diagnosed until age 19.)

I mention this because there has been a lot of debate recently about whether obesity causes autoimmune arthritis. My personal feeling is no, it doesn’t CAUSE autoimmune arthritis. In some cases, it could possibly be a TRIGGER or one of several triggers, but that is not the same thing as it being a CAUSE. Just as, no-one would say anti-malarial drugs cause Psoriatic Arthritis – there would be a lot of unnecessary deaths from malaria if that was the case – but for me, with my particular genetics, the anti-malarials probably were a trigger.

My autoimmune arthritis numbers are 32-9-27.

Today is World Arthritis day. If you’d like to, please feel free to share you onset story in the comments, or comment on your thoughts about the weight-debate.

Or you can post “Your numbers”

“Your numbers” are a combination of three numbers we all have:
#of (approximate) weight at time of onset - #of age at onset - #of (approximate or what everyone thinks you are) current age. So mine – I was approximately 32kilos at age of onset, I was 9years old, and I’m 27 now. Weight can be measured in any system used in the country of residence; it’s the formula that is most important. All of us have those three numbers.

If you have facebook or twitter, please post or tweet your numbers – but keep it secret! Don’t publically explain what these numbers are until the end of the day.

You can follow this awareness event Here

Thanks for reading

Little Miss Autoimmune