Spoons for the Lupus God!

I've been feeling pretty unwell this week. The last four days I've taken painkillers. This is rare for me - I usually try to avoid them if I can as my stomach is not exactly a fan - but the last couple of days I even switched to stronger ones as I just couldn't cope with escalating joint pain. I've also been having problems with nausea, dizziness, rashes, joint swelling and of course good old fatigue has been kicking my butt. I'd put most of this down to the heat and sun exposure (middle of summer here in New Zealand) but I was getting worried, as I felt so low on spoons, despite cutting down on what I was doing. Last night I found myself sitting on the floor crying, thinking "am I really going to have to cut back even more? Can't I just have a life instead of counting spoons all the time?" Then I realised my face was sore, checked the mirror, and low and behold... Butterfly Rash. 

I have a bit of a love-hate relationship with the butterfly rash. Obviously it's appearance is not really a good thing, because it means full blown lupus flare, but at the same time, it's reassuring in that once I see it, I know exactly why I feel crap and also, most importantly, that it will pass.  

I was talking to my friend Kendra from ACuteAngle about spoons, flares and the fact that the symbol for lupus is a purple butterfly, and she made me this fantastic cartoon:

Lupus God Sacrifice

This sums up so amazingly well what a flare feels like. When you're flaring, all the spoons get sacrificed to appease the lupus god, and there's not a whole lot left for anything else. Lupus is eating up ALL my spoons at the moment. But he's got to get full eventually, right? RIGHT?

Fork Lupus

If you'd like to check out more of Kendra's awesome cartoons, you can find them on the ACuteAngle Website or follow her on Facebook. 

Thanks for reading,
Little Miss Autoimmune

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.

Living in Bucket List Mode

Don't be alarmed by the title - I'm not dying, or at least not any faster than the usual!

Some stuff has been happening with my health, and I haven't posted about it for a couple of reasons. One because it's still all in the stage of "this will probably all turn out to be nothing" with only a slight possibility of it turning out to be "something", and two because as is just about always the way in life, ALL OF THE THINGS both good and bad happen at the same time, and finding the time and spoons to sit down and write a blog post becomes of low priority.

In the past when things have gotten bad with my health, I've tended to feel quite closed off towards new things or people. I never want to take on something new, or start a new friendship, if there's a chance that I will end up having to abandon it and letting people down. But as I say, when my health is at it's worst, that's when the good things tend to happen as well. New ideas, opportunities, or people appear in your life, right at a time when you're not sure if you're well enough to fully commit to, or appreciate, them.

In the past few months, I've had some really cool work and writing opportunities present themselves in my life, and this time around I've felt a lot more open about exploring them. This is in part because I've been thinking a lot about bucket lists lately. Not just for things I want to do before I die, but for things I want to do before I lose the ability to do them. I've come to accept the fact that my diseases may well progress. This may mean that I lose functions, or find things a lot harder to do than I do now. I'm already seeing this. As my joint symptoms have become active again, I'm finding it more and more difficult to do tasks that were easy a few months ago. But they're not impossible yet, so I'm keen to keep experiencing all life has to offer while it stays that way. I'm living in Bucket List Mode.

I'm also more open to exploring opportunities now, because I know myself well enough to be confident that I will do everything possible to avoid letting other people down. My doctor told me the other day that she thinks I've always been very honorable in the way I handle my diseases in relation to other people. I hadn't really thought of it like that before, but she's right: when I take something on, I do what I can to see it through, even if I do become really unwell during the process. And if it gets to the point where it's absolutely not possible for me to continue, I do my best to lessen the impact of that on other people. So even if this does turn out to be "something" I can still feel reasonably confident that I won't end up letting anyone down by taking these new things on.

So here's the deal with my health at the moment. A few weeks ago, I had an odd episode where out of nowhere I experienced a sudden-onset, blinding headache, and started vomiting - hugely bad timing, as I was away for a hens weekend at the time. As a non-drinker, I didn't think I would ever find myself vomiting uncontrollably while dressed in a Big Fat Gypsy Wedding costume and tiara, but there I was. I guess in a weird way that's a life-experience to cross off the list! I assumed at the time that it was down to my wonky-donky blood pressure, or perhaps just the heat. But over the next week I began to experience some other weird and slightly alarming symptoms. I struggled to hold a conversation, as I couldn't find words or forgot what I was saying. I was having trouble reading and writing, and couldn't work my computer. Most confusing, I managed to get on completely the wrong bus, despite always catching the same one. I wasn't all that worried until people kept starting sentences with: "Now don't worry, but..." (there's nothing that tells you there's something to worry about, more than people telling you not to worry!) so I made a doctor's appointment.

By the time I got in to see my GP, things had improved, and I was more or less back to normal. It's quite likely that we won't ever know what caused this episode. My GP said it could be down to my blood pressure, as I'd thought, though it was normal at the appointment, or perhaps an atypical migraine, though the headache was bi-lateral. The slightly more concerning possibility she raised was of it being Cerebral Lupus (inflammation in the brain, caused by SLE.) She said she has another SLE patient the same around the same age as me, who's experiencing very similar symptoms, though her's have been reoccurring episodes whereas this was a first for me. She also gave me the "now don't worry, but..." speech, so I know that this possibility is not exactly ideal. The plan of action is for me to have an MRI at some point, to see if we can figure out what's happening. Unfortunately my insurance will cover an MRI but only if I'm referred by a specialist not my GP (yep, we have insurance issues in NZ too!) and the public system will take a really long time.

So for now I don't really know. I'm honestly not really that worried, in fact I'm more concerned about the idea of actually having the MRI than of any possible negative results. I don't really think it's going to show anything. I strongly suspect these symptoms will remain a mystery, but even if it does turn out to be something I'll cope with it. In the meantime, I'm cramming in all the good bucket-listy things, because either way, there's a lot of them to fit in.

Thanks for reading,
Little Miss Autoimmune

The Vampire's Cousin

Stitches ready to come out post-biopsy

For me one of the most inconvenient symptoms of SLE is being photosensitive. If I’m in direct sunlight for too long, I come out in large wheals and often flare very badly afterwards. Added to that, the medications used to treat SLE actually increase this sun-sensitivity, and also increase the risk of developing skin cancer. Not so great when we already have such a high rate of melanoma in New Zealand from the hole in the ozone! There’s only really one way to deal with it – avoid being in the sun as much as possible, and slip, slop, slap and wrap when you can’t avoid it. 

You may remember last year I had a biopsy done on a rash on my neck. At the time, my dermatologist thought it may be one of the autoimmune forms of folliculitis, but in December I got the biopsy results back from my GP, and it didn’t show folliculitis but instead showed that the sun sensitivity was likely getting worse. It also probably wasn’t helping that I’d been getting a bit lax about covering up.  

It was really weird timing, as I’d just finished reading What We Saw in the Dark – a novel about three teenagers living with Xeroderma pigmentosum (a rare genetic disorder, in which the ability to repair damage from UV light is deficient) who spend their entire lives living at night, trapped inside during daylight hours. I’d also just met another lupus patient, whose skin, head to toe, had suffered permanent visible damage from sunlight. So all in all, I didn’t feel too sorry myself, as the universe seemed to be spelling it out to me that it really could be so much worse. It was also a bit of a reminder that I do need to take this more seriously, as I want to try and avoid the kind of skin damage this other woman had experienced. 

I’ve been being a lot more careful about not leaving my skin exposed when I’m outside since, which has led to a few “interesting” outfits recently. I did, however, get the best compliment the other day when I attended a friend’s outdoor wedding and she exclaimed “Wow, you’ve actually managed to look normal!” so I think I’m starting to get the hang of it now.

I’ve noticed, that if the subject comes up – which it does when people wonder why I’m piling on on long sleeves, scarfs and hats in summer – I seem to be answering the same questions over and over. I don’t really mind that, but at the same time, I thought it might be easier to set up a sort of FQA on the subject.

What happens if you go in sunlight?
I get Uticaria, which is basically a fancy word for hives. These come up as big painful, itchy wheals and blisters. They then turn into an eczema-type rash, which often then gets infected or ulcerates. Nasty generalised SLE flares usually follow. I also get sunburnt a lot quicker than normal, and have a high risk of skin cancer

So… if you go in sunlight, will you like die?
No, I’m not actually a vampire. More like a vampire’s distant relative.

Aren’t there things in sunlight that humans need?
Yes, the main one being Vitamin D. Having low Vitamin D levels can have an effect on mood, energy levels, and can cause a whole host of health problems. There are some food sources of vitamin D, such as mushrooms and fortified dairy products, but from what I understand if you’re not getting enough from sunlight for whatever reason, it’s best to get it from a supplement. I take vitamin D tablets twice a month, and feel a lot better for it.

Don’t you get hot, being covered up all the time in summer?
Yes, but the reality is it’s a choice between covering up and dealing with the heat, or not going outside at all. I try to arrange things so I can stay inside during the middle of the day, but sometimes I can’t, and covering up with clothing and 50+ SPF is the only way around it. Sometimes this means that I won’t come to events that are held outside, or I may be a bit antisocial at barbeques etc. and sit inside by myself.     

Doesn’t that thick sunscreen mess with your skin?
Let’s just say I’m not going to be doing any cover girl ads anytime soon. This is one of the big reasons I wear a lot of clothing, because it cuts down on the amount of sunscreen I have to use, though in some situations I do have to use sunscreen under my clothing as well.

But don’t you ever just want to sit in the sun?
Personally, sunbathing was never something I particularly enjoyed before I got sick, so this isn’t really something I feel I’m missing out on. I get why this would be a big deal for some people though. Unfortunately, the reality is that when you’re living with chronic illness, there are sometimes going to be things that you want to do, but can’t and you just have to find a way to be okay with that.

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

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.

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

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.

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.

Answers

I’ve been fairly slack about blogging lately. Usually when I’m not updating regularly, it’s because I feel I have nothing interesting or useful to say. Lately it’s been the opposite. There are too many things to say, but formulating them into coherent, bite-sized posts has been too difficult, and so despite starting many drafts, not much has actually made it into public view.

I’ve had a fair few medical appointments lately. Some of them have gone well, some not so much, but I think maybe the easiest way to update is just in a summary of the things I’ve found out.

 1) My Vitamin D levels were super low.

From what I’ve read, the prognosis of SLE with low Vitamin D levels is not good, and so it’s important to check levels or failing that just start on a supplement. Reading this had worried me somewhat, as I was also aware that pretty much the entire population of New Zealand has low Vitamin D. So much so, that GPs are not even allowed to request the blood test anymore. My GP told me that she has actually taken to just starting people on a Vitamin D supplement without the blood test, as it’s unlikely that they’re NOT low. Specialists are allowed to order the blood test however, and so my rheumatologist had tested mine.

As SLE is photosensitive (reacts to sunlight – rashes and/or generalised flares) I avoid direct sunlight, and slip-slop-slap and wrap anytime I’m outside. Therefore I was expecting my results to be low. I just wasn’t quite expecting them to be quite so low.

Google tells me that Vitamin D levels can be explained like this*:

90-100 is the optimum range. You want your level to be here, for best health

50-90 is within the “normal” range, but in terms of vitamin D, you want to be optimum not just normal

32-50 is considered deficient

Levels should never be under 32

Levels under 20 are considered critically low

My level was 21, so you can see from the above that that wasn’t good. I had ten days of daily supplements, and now am on monthly, so I'm hoping my levels have improved.

2) My blood pressure is low

I’ve been having dizzy spells, and I wasn’t sure why. As a teenager, my blood pressure was always slightly low and then fairly often it would drop suddenly and I would get to know the floor a little better. I still don’t really have an explanation for why that used to happen. Eventually “my blood pressure just drops suddenly for no reason” became the reason. It stopped happening around the time I first started on DMARDs, so I have suspicions it was related to the autoimmune stuff all along, but I guess I’ll never know for sure.

I haven’t quite got to the regular fainting stage yet, but I have had a couple of crashing-into-walls, or grabbing-the-nearest-person’s-arm moments though. It may sound weird, but I was quite relieved to see the dizziness reflected in my blood pressure. Even though it doesn’t really change anything, being able to say “I’m dizzy because my blood pressure is low” rather than “I’m dizzy for no particular reason” feels slightly better.

3) The random swelling in my tongue andthroat is not an allergic reaction

When I described what had been happening, my nurse explained that it’s not an allergic reaction, but most likely from lack of saliva. My mouth is very dry, and this is probably causing the spitting blood in the sink issues too. My nurse has sjogrens syndrome herself, and said that the same thing has happened to her. Basically the tissue in your mouth and throat gets irritated from being so dry and then swells, leaving you feeling like you’re choking. It explains why antihistamines didn’t help, and that the swelling eased when I drank water and cooled down. I’ve been using dry mouth rinses and gums more often, and been careful to always have a bottle of water at hand. I’m still getting occasional swelling and bleeding in my mouth, but it does seem to be keeping it at bay.  

There’s heaps more to update on, but this is more than enough for one post. Hopefully I’ll get my act together soon and start doing that stringing-words-together-coherently thing soon :P

Thanks for reading

Little Miss Autoimmune

*Please don’t take this as medical advice. I have no idea whether this is accurate or not. As I said, it’s just what google told me.