Croc-rage

70% of the internet is just a giant ball of rage...

While I was struggling my way through the rain on my daily walk yesterday, I noticed one of my feet was getting particularly wet. When I got home, I checked, and yes indeed, the bottom of my shoe had worn through. I was a little upset, as these are undeniably very cute shoes, but then I remembered I had bought two pairs and retrieved the other from the wardrobe.

My eczema and psoriasis get worse with a number of things – sunlight, certain foods, and the most annoying one: the glue in shoes. That means my options for footwear are slippers or crocs/crocs knock-offs. Given that I have arthritis in the joints in my feet, slippers do not give enough support, so crocs are my only option.

There is an irrational amount of rage directed towards crocs. There are comedy routines, facebook posts, entire blogs dedicated to croc-rage.

I don’t understand it. No-one is making you were crocs, so your comments about how ugly they are etc. etc. are bullying to people who do. Plain and simple.

Seriously people, get over yourselves!

Usually if I’m in the room, when someone starts an anti-croc tirade, they will eventually realise and say “oh, but it’s okay Helen, you have an excuse to wear them.”

The last time I wore high-heels, I had pain so bad in my feet and lower back, it made me want to vomit. Before I discovered I was allergic to the glue in shoes, I had to sleep with my feet covered in steroid cream and wrapped in gladwrap because the rash was so bad and subsequent infections were causing a serious risk to my health. So no, wearing crocs is not a choice for me, but what if it was? 

Why exactly do I need an excuse to wear whatever footwear I want? Sometimes I think your shoes are ugly, but I don’t say it because that’s mean and I’m a nice person. When people make these kinds of comments, I usually laugh along and pretend I find it funny. I don’t. It’s mean. And honestly, it makes me like you a little less. Okay, I’m kidding about that last part, but it certainly doesn’t make me like you more!

You don’t know why someone is wearing crocs. Maybe they have chronic pain too, but are not “out.” Maybe they have a skin allergy which you don’t know about. Or maybe they just want to be comfortable, and you actually don’t have the right to make them feel bad about that. I really like my crocs. My growth was stunted when I was younger, and so I have to shop in the children shoe department. I love that I can wear pink shoes with butterflies on them, and if you think that makes me childish or immature, you live in the land of no imagination.   

I think the thing that frustrates me most about croc-rage is how do you have enough energy for it? I barely have enough energy to put my own shoes on in the morning, let alone care about what someone else is wearing.

If you don’t like my shoes, just look at my face. I know sometimes tall people are confused by the fact that my face and feet are closer together than yours, but seriously, it’s not that hard.

- Little Miss Autoimmune

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.

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.

Thanks

Little Miss Autoimmune

Some Good News

Today, I had my appointment with the Neurologist. I’ve been secretly (and not-so-secretly depending on how closely you know me) freaking out about this appointment.

A couple of days ago, one of my friends asked why I was so nervous, and I had to stop and think. In the end, I came up with three reasons.

1) I was worried the neurologist would be horrible to me. This may sound like an irrational fear, but the neurology department at Wellington Hospital do kind of have a rep for being rude and unhelpful. I had to see them when I was a teenager, and while they weren’t horrible I was pretty glad I didn’t have to see them regularly.

2) I was worried I’d have to go through a barrage of MRIs and other unpleasant tests, only for them to say: “Well, we’ve ruled everything out. Surprise, surprise, it was lupus all along.”

3) And this was the hardest one to say aloud: I was worried they might not rule everything else out. I was worried that I may actually have something like MS, on top of everything else.

Well, it turned out none of those things happened!

The Neurologist was really lovely. He was thorough and helpful, and even cracked a joke or two during the appointment. He didn’t get impatient with me when I was slow to... well everything I do is a bit slow really, and didn’t act like I was just being difficult when I was too short to climb up onto the bed easily (you’d be surprised how many doctors seem to expect me to spontaneously grow to make it simpler!) He helped me out when my leg started spazzing out and I lost my balance, and was very reassuring and encouraging about all the symptoms I’m having rather than suggesting they’re “all in my head.”

I did have to do some balance, and other neurological tests, but no bloods, CTs or MRIs (thank God – I’m super claustrophobic!)

The end result was that there’s no evidence of a progressive neurological disease, and while my nerve function is affected, there’s no sign that there’s any damage. The most likely cause for all the tremors, pins and needles etc. is that inflammation from all the autoimmune stuff is pressing on the nerves causing them to get a bit confused. There is the potential that one of my meds (for PCOS, not for lupus) could be adding to problems, so I need to check in with my GP about that, but that in itself is nothing major.

So, the best course of action is simply to continue to try and get all autoimmune issues back under control. No, it’s not a magic pill, but it does mean that I’m already on the right track and there’s hope that everything will settle down eventually.

While none of the things I was worried about actually happened, I don’t think that worry was wasted. While I agonised over all the negative possibilities, I was mentally preparing myself for them. I certainly wouldn’t have been happy, had any of them occurred, but I would have coped because they wouldn’t have been coming at me out of the blue.

As it was, none of them happened and it all went really well. So the niceness of that, more than made up for all the worry.

- Little Miss Autoimmune

My Amazing Friends

The other day, a couple of ladies came to my door to talk to me about the bible. I’m not really religious, but nor am I not religious, if that makes sense. I talked to them for a little while, all the while feeling excruciatingly embarrassed that I was answering my door in my nightclothes.

At some point during the conversation, I mentioned that I had lupus (probably to explain why I was walking with a crutch, and still in a nightie at midday.) They began talking about suffering, and I said that I didn’t believe you’re given more than you can handle. This was apparently a point of contention, as they immediately began to assure me that God didn’t hand out suffering, the Devil did. The Devil had given me lupus.

I really didn’t know what to say at this point. Part of me wanted to laugh at the image of a red, cloven hoofed Devil going around handing out lupus.

I understand what they were trying to say, but I really didn’t agree with it. I don’t like the idea, that sickness or any kind of suffering is a punishment, or that it is in any way evil. Sure, it can feel evil, but as far as I’m concerned it’s just something that is. Putting a judgement like that on it – thinking of it as a punishment, or as evil, just makes the experience even worse. Sickness etc. is bad enough by itself without adding to it.

I have some amazing people in my life. Many of them have illnesses of some sort – this is not why they’re in my life. Some of them are family members, or people I went to school with. Others I’ve worked with, either in the past or currently. Some I’ve met through support groups, online or in real life. All of them are amazing.

When I said to the ladies at my door, that I don’t believe you’re given more than you can handle, it’s because I look at the people in my life and the ones who have been through the most crap are with out a doubt the strongest of the people I know. I don’t know if they’re strong because they’ve had to be, or if they were always strong and it’s just more visible because they handle the things life throws at them with grace and humour. I suspect that they were always strong. And always amazing.

This is my friend Tessa’s blog. She’s been going through a tough time, with some serious illness this year. She is, without a doubt, one of my strong and amazing friends, but even my strong and amazing friends get down sometimes. So, if you’d like, maybe check out her blog and send some love and positive vibes her way. I’m sure she’d appreciate it.

- Little Miss Autoimmune.

Just another day.

Sometimes it worries me how quickly things become commonplace when you’re sick.

Last night, I was spitting blood into the sink again. A few years ago, I would have been terrified to find my mouth was bleeding profusely for no apparent reason. Now it’s just an annoyance.

As I rinsed the blood away, I started retching, then threw up in the sink. Again, I feel this should have bothered me more than it did. Admittedly, I did have a small moment of panic because the vomit was bright red (I know, great mental pictures in this post!) but once I remembered I’d been eating berries earlier I just cleaned the sink and went to bed.

I’m the girl who didn’t throw up once between the ages of 14 and 25, even when I had food poisoning in that time. Now I sleep with a bucket beside the bed every night, just in case.

Lately I seem to have developed yet another fun new symptom. On Thursday, I woke in the night to find the side of my face was swelling up. My lips and tongue soon followed suit and it was getting a little hard to swallow. When the antihistamines I use for my latex allergy didn’t do anything, I phoned my dad and got him to take me to A&E. After a couple of hours and some more antihistamines, the swelling had gone down enough for me to go home, but I was no wiser as to the cause.

Night before last, the same thing happened again – face, lips and tongue swelling. I didn’t go into A&E this time, but just took the antihistamines and kept in text contact with my dad until the swelling went down. Last night I was sitting in a meeting at work, when I noticed the inside of my lip was covered in lumpy blistery things. A few minutes later, my tongue had swollen up again. I got up and left the meeting, and one of my colleagues followed me out. I tried to tell her I was fine, but what came out was “thigh sthmine” (she laughed a lot!) Less than two minutes later though, the swelling had gone down enough for me to talk clearly, though I was still adding a few ‘s’s to words.

I don’t know what’s causing this. Initially, I thought it was an allergic reaction, but the last one swoll up and then went down again so quickly I don’t know if that’s possible. The only common factor seems to be heat – first one I was running a slight fever, second I’d just had a hot bath, third, the office was really hot – and it does seem to get better when I move somewhere cooler or drink water, so maybe it’s that. I don’t know.

Though I do spend a lot of time analysing these situations afterwards, they worry me less and less. My colleague was confused as to why I’d left the meeting. As she said “when there’s a chance you might choke on your own tongue, you stay with people!” I was really more concerned that I might accidentally spit my water out, if I tried to drink and didn’t want to do that in front of people. So I left.

I wasn’t really worried about choking, or my throat closing up. After the first time, I didn’t feel the need to go back to A&E either. As I said – commonplace. I think if I panicked about everything, I’d be an emotional wreck – as would my doctor, as I’d probably never leave her office.

Though I don’t really want to be “used to” any of this stuff, it’s not really disrupting me as much anymore. In a way, it’s comforting to know I can spend my morning throwing up, swollen up, or stuck on the floor because my foot’s gone numb, then just go on with my day as if nothing’s happened. Of course, it would be more comforting if I wasn’t throwing up, swelling up, or getting stuck on the floor at all... but if I have to do those things, I’m glad to know I can do them without panicking.

- Little Miss Autoimmune

Moving House

I think everyone probably comes out of moving house with a few mystery bruises, but add to that illness and medications that cause easy bruising and you're going to come out a bit blotchy!

Anyway, apart from sore knees I seem to have survived moving with only minor flaryness - I was expecting a major one, but it hasn't arrived *knock-on-wood*

I'm now pacing my way through the last of the unpacking, and getting settled.

- Little Miss Autoimmune

Body Image

When it comes to having a healthy body image, I think I’m doing pretty well. Yeah, I know, it seems unlikely since hardly anyone out there is actually happy with their body. Sure, I have moments when I wish my hips were smaller or my boobs were bigger, and there are certainly still a number a photos I delete for having too many chins – but they’re just moments. Most of the time I’m happy with the way I look. Most of the time the time I think my boobs, hips and chin(s) are fine just the way they are.

Being sick affects my weight in quite dramatic ways. When my joints were really bad, I gained a lot of weight from inactivity and steroids have the fun side-effect of making you want to eat everything in sight. With coeliacs, I’ve been known to loose five or six kilos in a few days if exposed to hidden gluten, and my nausea can get so bad that I just stop eating.

One of the strange things I’ve noticed about being ill is that the days I feel the worst are often the days when people tell me I look good. For a while I thought maybe The Universe was being kind and just trying to make me feel better, but then I realised there are reasons why I get compliments when I’m sick. As my doctor said to me today, the version of the butterfly rash I get is actually a fairly “pretty” one, and when I’ve got it only mildly it’s usually mistaken for “rosy colouring.” I’m not a huge fan of make up – largely because I’d rather sleep an extra half hour than wake up to “put on a face” but if my skin is particularly rashy or I have huge dark circles under my eyes, I’m more likely to make the effort. Similarly, if I’m loosing my hair from illness or meds, I make the time to go to the hairdresser to get it tidied up or spend more time at home trying to make it look presentable. I live in Wellington (a very windy city) so on most days I go for a convenient but not-terribly-flattering bun hairstyle, but if my back and arms are flaring, I’ll wear my hair out.

And then of course there’s the weight loss.

A few years ago, I was on a combination of medications that really did not work for me. My kidneys stopped working properly and my blood pressure skyrocketed. I wasn’t nauseous but I wasn’t hungry EVER. I got palpitations, couldn’t breathe and passed out every time I climbed some stairs or even just took a shower. It took months for kidneys to come right and by the end of it all, I’d lost A LOT of weight.

I was in the supermarket few months later, and ran into someone I hadn’t seen for a while. She commented on the weight loss, and when I explained what had happened she joked: “Oh, what’s the medication? I need that kind of weight loss.” More recently, someone commented on how good I was looking lately then added: “almost worth having lupus.”

Um.... exactly how fat and ugly was I, that it’s worth having lupus to look “better”?!

These kinds of comments upset me. Yes, I know they’re jokes. No one really wants their kidneys to stop working, or to be diagnosed with lupus so they can loose a bit of weight, but it still frustrates me because it comes from a mentality of: Skinny is always healthy. Even more so: Skinny is always better. I hate this mentality. This mentality says it doesn’t matter how bad you feel, or what torture you have to put yourself through, as long as you’re thin at the end of it. This mentality says looks are more important than health. This mentality invariable says: You are not good enough.

I refuse to subscribe to this. I am good enough whether I am overweight, underweight, or somewhere in between. Most likely my weight will continue to bounce up and down as medications and illness wreak havoc on my body. Yes, I will probably lament any weight gain – I won’t lie and say it doesn’t upset me. That does not mean I will celebrate any weight loss if it comes at the price of me feeling like utter crap.

What I will celebrate is any signs of returning to good health, whatever weight it comes at.

Thanks for reading

Little Miss Autoimmune

(Not-so) Invisible Illness

The other day I was getting on the bus (to ride the three stops from the shop to my house because I was too tired to walk) when the bus driver leapt up and grabbed me because he thought I was falling over. It was quite alarming, because I wasn’t falling over and had no idea what he was doing, but he meant well and it was nice to know that, had I been falling over, he would have been willing to help. After realising his mistake, he then took my card and tagged on for me and waited until I’d sat down before starting off. When I was getting off the bus (three stops later) he looked worried and asked if I had far to walk from there. I didn’t – the bus stop is just around the corner from home – but again, it was nice of him to check (not really sure what he was going to do if I did have far to go though?)

I was thinking about all this later. Part of me was happy to know that there are nice people out there willing to help out someone they feel is in need, but the other part of me felt sad and I wasn’t quite sure why. I, like most people with invisible illnesses, am far more used to the old chestnut: “But you don’t look sick!” Or when they see my crutch: “So what have you done to yourself?” I’m so used to people not believing me, or simply not realising, that it felt really strange to have someone notice I was struggling just by looking at me.

As I’ve got sicker, it’s become far more visible. While I’ve walked with a crutch for a long time, it’s now quite obvious that I really need it. My legs don’t always do what they’re told, and get a bit wonky-donkey when I’m walking. Tremors are hard to hide – in particular the new fun symptom of my head bobbing – and of course rashes, being pale/green and weight-loss tend to be fairly noticeable.

After a few minutes of moping over all this, I realised I didn’t care!

A few people have looked at me strangely when my head starts bobbing, but once I explain that I’m not really emphatically agreeing with them they don’t mention it again. A few days ago, I was stressing about going out to dinner because my tremors were really bad. Then I realised, no-one is going to laugh at me (and if they did, they certainly wouldn’t be the kind of person I want to hang out with!)

Being sick – invisible or not-so-much – is hard, and the majority of people get that. The ones who don’t, either just have no idea and will probably change their tune once they understand a little more about invisible illnesses. The ones who do understand about invisible illnesses and still don’t get it? Well, maybe I just don’t hang out with them :-)

Little Miss Autoimmune

Limbo Blues

One of my friends and I often talk about being in limbo. Most people have the idea that when you get sick, you either get better or you die and, though it is a blunt way to put it, for a lot of diseases this is true.

However, with many chronic illnesses, you may get better, but you don’t always get “better” and (all things going to plan) you don’t die either. You’re in limbo.

Limbo sucks.

When you’re in limbo, people will try to understand, but realistically when you repeatedly cancel plans, or straight out say no to things, or don’t meet responsibilities, they’re going to feel let down.

I sometimes wonder how much to tell people. I understand that it probably feels like a cop out if I tell people “I’m just not feeling up to” doing whatever. If I’m vague about why I’m not doing something, people may feel like I’m using being sick as an excuse. On the flipside saying “sorry, I’m not coming because everything I’ve eaten today has gone straight through me,” is more information than most people need. Often I will say no to things if I think there’s a possibility of people having to look after me. However, if I tell people this, their response is often to assure me they don’t mind. In theory, they probably don’t mind, but in reality if I fall and can’t get up, or have tremors so badly I can’t walk, or start vomiting and/or passing out it’s going to be a different story. All through my teenage years, my friends had to be prepared for the fact that every-so-often I would pass out. It wasn’t easy for them, and back then I could still get myself up off the floor easily. I want my friends to be my friends, not my caretakers.

Similarly, when people ask me how I am, I’m not sure how honest to be. We’re so conditioned to put on the “I’m fine” face, that’s it’s hard not to even when you know it’s a question not a greeting. Most of the time, making a joke of things – saying “today was decidedly lacking in awesomeness” instead of “I actually feel really awful today” – is easier. Many of my friends know me well enough to ask: “but how are you really?” if they want an honest answer, but even then it’s hard. Sitting there listing everything that’s wrong is not going to make me feel any better, and it’s a sure fire way to loose friends and alienate people.

Lately I’ve been struggling with the blues. I’m not going to say depression, because I don’t think I’m really “depressed”. This doesn’t mean that I need cheering up though. I’m okay with being a bit down. Frankly, I think it would be a bit weird if I wasn’t a bit down. Yes, I’ve been sick for years. In fact, I can’t really remember a time in my life where I had “good health,” but lately I’ve been overwhelmingly sick.

It’s probably kind of hard for people to understand, since if you saw me three months ago (or even three weeks ago) I wasn’t that bad. Things have got worse much quicker than I thought possible, but I’ve repeatedly told people “I’m okay” so they’ve every right to be confused.

Right now, all my energy is going into trying to get better. I don’t really feel like doing much else, and I know that that may result in people feeling down. Please bear with me. I will get better. Bar cures for all my diseases being found, I’ll still be in limbo, but it will be the old limbo. The one that still sucks, but at least leaves me with the energy to leave the house occasionally.

Thanks

Little Miss Autoimmune