Systemic/flu-like symptoms of autoimmune arthritis

Until recently, when I heard the word ‘systemic’ I thought of films and news reports about corruption in governments or multimillion dollar corporations… Press conferences with someone saying “The problem is systemic” as an answer to why they hadn’t simply fired the CEO (or maybe assonated the country’s dictator.) Making a scapegoat of the CEO or Dictator in question, wouldn’t do anything to solve the wide spread corruption infecting the rest of the corporation/government.

Let’s pretend the only one of my joints affected by autoimmune arthritis was my left wrist. If autoimmune arthritis was (as many people imagine) a disease purely of the joints, I could conceivably amputate my left lower arm and no longer have arthritis. I doubt anyone would actually do this, but, for arguments sake, it could be considered a cure.

However, autoimmune arthritis is a systemic disease. In the example of the multimillion dollar corporation, the corruption was systemic because it was spread through all of the employees of the organisation. Firing the CEO would be like cutting off my lower arm. It would do nothing for the disease in the rest of my body.

In the last few weeks I’ve been having a systemic flare of my psoriatic arthritis. I’ve had inflammation in my throat, (making me loose my voice) inflammation in my eyes, (making me see double) inflammation of my skin, (causing rashes and skin ulcers) inflammation in my stomach, (causing pain and nausea) and a whole host of symptoms very similar to those of the flu – fatigue, fevers, dizziness, etc. All of these are caused by my arthritis and none of these would have been solved by the hypothetical arm-amputation.

I wrote this post as a participant in IAAM’s 2nd Annual International Autoimmune Arthritis Awareness Scavenger Hunt, currently happening online at their Facebook page. They are posting several Scavenger Hunt items through the end of Dec. 5th, I am posting #8: Systemic Affects. As I talked about in this blog entry, those dealing with Autoimmune Arthritis experience problems with the "whole system", from the core organs and out to the joints.

So this leads me to your task for Scavenger Hunt Awareness Items for #8: To earn 5 Awareness points (that can be exchanged at the end of the online game for free Awareness merchandise), find a photo of the body with organs and write which of these areas you (or the person you know with Autoimmune Arthritis) is affected. But you must post in the next 10 HOURS to earn your points. Time’s ticking!http://www.facebook.com/pages/The-Buckle-Me-Up-International-Autoimmune-Arthritis-Movement-IAAM/124639837561193
*IAAM stands for The International Autoimmune Arthritis Movement, which will soon become the 1st nonprofit in history exclusively benefitting Autoimmune Arthritis. http://www.iaamovement.org/
Little Miss Autoimmune :-)

Update

OK, so I’m writing this post as part of the IAAM http://www.iaamovement.org/ online scavenger hunt (and also to update you on the happenings of the last couple of weeks.) I’m supposed to include a clue in this post, to direct people as to what to do next, in their online scavenging. Unfortunately, I’m not actually clear at this point as to what the clue is, so that may have to appear in the comments at a later point. :-)

So, the topic for this post/clue is the systemic/flu-like symptoms of autoimmune arthritis. I picked this out of scavenger hunt post topics, because I’m the middle of my first systemic arthritic flare (this may not be entirely true – I’ve probably had systemic flares before, but not understood what they were.) The past few weeks I’ve had inflammation not only in my joints, but in my throat, skin, eyes and stomach.

Before I became involved with IAAM, I didn’t understand the concept of autoimmune arthritis being a systemic illness. As a recap for those of you not so familiar with this, autoimmune arthritis is not just a disease that affects joints. Internal organs, soft tissue, skin AND joints can all be involved at different times, hence, systemic (I just went and looked up the definition, so I could get this right: Systemic – Of the bodily system as a whole, not confined to a particular part.)

I had some idea that at some point my internal organs could be affected, but I had thought this was rare and not really something I had to worry about. I didn’t really get that practically ANY part of my body could be affected, or that my arthritis could cause symptoms like nausea, fevers, fatigue and others very similar to the symptoms of viruses like the flu. I also had no idea that this was actually pretty common, not the rare occurrence I had imagined. In hindsight, I perhaps should have realised, as the only reason my doctor made the connection that the problems I was having were autoimmune based, was the fact that the inside of my mouth had turned into one giant ulcer. I had always put this down to being run down because of the arthritis, not that this was in fact a symptom of the arthritis itself.

So, to give you some idea of what a systemic can be flare like, I’ll describe what’s been happening to me over the last few weeks (no gory details, I promise, and please keep in mind that autoimmune arthritis is very different for each person experiencing it. Just because this is what it’s like for me, doesn’t mean that’s what it’s like for anyone else.)

In addition to my joints being stiff, swollen and sore (so much so that I couldn’t stand up, straighten my left arm or chew food,) I lost my voice for about a month. I could talk, but it hurt and my voice would get very croaky after about five minutes (not so great when my work involves six hour weekly shifts on a mental health helpline!) I had some swelling in my throat and the back of my mouth and swelling in my neck, almost like a glandular problem. I’ve come up in a rash on arms and hands, and have had six or seven skin ulcers. Fortunately, all but one of these healed with a little bit of antibiotic/steroid cream and the other cleared up reasonably quickly with some antibiotics and dressings. I’ve had inflammation in my eyes, which means I’m seeing double and have had some pretty impressive bouts of nausea/dizziness.

Probably none of these are things that people associate with “arthritis.” I don’t really blame them, as I didn’t understand it myself. Fortunately, I read the information on IAAM’s website when I did, as I wouldn’t have realised what was happening otherwise.

Now, back to the scavenger hunt. As I said, I’m not sure what the clue is, so if you’ve been directed here via another clue, check the comments and hopefully it will be there. Actually, just thinking about this, I’m not sure if I’m meant to post this yet, or whether I was supposed to wait for further instructions. Unfortunately, I can't do that, as my plans to participate in the online scavenger hunt have been set aside by the fact that I've had an elderly family member pass on this week and her funeral is this afternoon. So, I guess if you're looking for a clue - it may be as a comment from me or from someone else, depending on whether I'm able to get back online today.

Oh well, I’m sure it will all work out in the wash.

Happy scavenging!

Little Miss Autoimmune :-)

I'm a bit of a liar :-)

Often when people find out I have arthritis, they say something along the lines of "Is that very painful?" or "That must be really difficult." My response is usually along the lines of "Oh, no, it's fine." or "Oh, you know. It's not too bad."

That is a lie!

Living with arthritis is incredibly hard. It's not one big difficult thing, it's 1 million small difficult things. Arthritis makes everything hard. Even something as simple as brushing my hair, can be a huge struggle.

I've heard many times from other people with autoimmune arthritis how frustrating they find the misconceptions people have about arthritis. I realised, I'm probably contributing to those misconceptions by downplaying how bad it is.

Of course, this doesn't mean I'm going to go out and complain for half an hour every time someone asks me if it's painful, but I could say something like: "It's very painful, but I cope with it." or "Yeah, it is difficult, but it's part of my life and I deal with it as best I can."

Buckle Me Up http://www.iaamovement.org/ have suggested that instead of saying we have 'arthritis', we say we have 'autoimmune arthritis.' Hopefully, that way, instead of getting the standard response of "but you're too young to have arthritis" or "my mum has that - she takes ibuprofen" people will ask "what's autoimmune arthritis?" If enough people start saying this and follow it up with a quick explanation about the difference between autoimmune forms of arthritis and degenerative forms, it won't be long until we don't need that explanation any more.

Little Miss Autoimmune

I get a stomach ulcer and positivity goes out the window...

Well, it's all pretty much there in the title. I found out yesterday I have a stomach ulcer.

I've had symptoms for a few months, but didn't really take much notice. I had a persistent stomach ache, but I put that down to being anxious, or having indigestion, or being hungry (despite the fact that eating made the pain worse.) It wasn't really a problem until about a week ago when the pain became unbearable and I had times where I couldn't stop dry wretching.

It was probably unfortunate that I had blogged about positivity a few days before, because I did not feel very positive at that point. Fortunately for everyone else, I lost my voice on the same day, so I was not terribly vocal about my lack of positivity. A wee bit of it did come out via the internet though.

Oh, that reminds me... I've found this great fibro group on facebook. http://www.facebook.com/#!/pages/The-Fibromyalgia-Fun-House/153222891381838
I don't know how to do that thing where you put the name of something, and that's the link itself, but this should hopefully work. They've been really lovely to talk to, and gave me some great advice, so thank you to them.
Oh, and while we're on the facebook thing, I now have a Little Miss Autoimmune facebook page. There's a link to it above... or maybe to the left... I'm not sure where exactly it's going to be in relation to this post, but I've sure you'll be able to find it if you'd like to.

So, anyway, back to my point. I have a stomach ulcer. It's not as serious as it could be because there's no signs of it bleeding, so that's really good. Unfortunately, it's most likely caused by my arthritis medication, which may mean I will have to come off it. I'm hoping not, as I can't really move without it. The doctor said the medication he's given me to repair the damage can also protect from further damage, so I may just have to stay on it long term. From what I've read, autoimmune arthritis itself can be a contributing factor, but I read that on the internet so I don't know if it's accurate.

It's weird, because I when the pain got bad last week I jokingly said I thought I was developing an ulcer. Then I googled the symptoms and causes and went, hey, maybe I am actually developing an ulcer.

As you might have guessed, this isn't really a proper post. It's kind of just an update to explain why I'm not doing a proper post this week.

Back to regular programming next week.

:-) Little Miss Autoimmune

Positivity

A couple of weeks back I had an appointment with my Rheumy. It had been about a year and a half since I'd had an appointment with him (I'd just had phone consultations and appointments with my nurse in that time) and I had this idea that at the appointment he'd be able to give me some magic fix.

Think again.

Basically he said there are very few medical options left for me. My only options were to go on strong painkillers or to try some psychological approaches.

I've said pretty much right off the bat, with my diagnosis, that I didn't want painkillers. I'm not opposed to taking the occasional panadol, but even then I only want to take them when I absolutely have to. In the past my nurse has told me I should be taking it every four hours but that's just not something I want to do. I don't want opiates messing with my head, and I don't want to have to rely on pills to be able to function.

So, we discussed the psychological approaches. My Rheumy was careful to explain that he was not suggesting my pain was in my head, or that I could be "talked" out of feeling pain. This was more about finding ways to live with the pain and achieve my goals despite it. I was a little put off by the fact that the group therapy he was recommending to me was called "Dare to Change." This, to me, implies that they think I'm reluctant to change or that I'm resistant to the idea. Actually, I also think it implies that I need to change my attitude, but personally I think I have a pretty good attitude.

Not long after I was diagnosed I read a couple of articles about chronic pain patients. One said that although things will be more difficult to do when you have chronic pain, you shouldn't stop trying to do them. Yes, you could sit around saying 'well, it's too hard. I'm in too much pain. People shouldn't expect too much of me,' and a lot of that would be true. But how would that feel? Wouldn't it feel so much better to figure out a new way to go about achieving your dreams? Achievements feel so much better than excuses.

At first, I didn't understand what they meant by 'finding a new way.' It sounded kind of new age-y. Then I thought about it. I want to be a writer, but what happens in the months when I my joints get so bad I can't type? Instead of not writing at all (which a times, I admit, I do) I break out the voice software, or the pen, or the friend to dictate to and keep going. That is my new way to achieve my dreams.

That doesn't mean I'm going to go off and work a forty hour week. There is just no way I could do that without ending up in hospital, so it's not just about finding a new way to achieve your goals - it's about working out how realisitc they are. All my life I wanted to be an actor/filmmaker. After my diagnosis, it became harder and harder to work towards this goal. I ended up sitting down, and working out what it was about acting and filmmaking that I liked. I realised it was telling stories that I liked, and writing seemed like a much better fit for me.

The other article talked about how, in general, chronic pain patients have unreasonable expectations that their pain will get better (that's kind of complicated wording, but I wasn't sure how to phrase it. Hopefully you can figure out what I mean.) This could have been really depressing, and for a while it was. I had, up until that point, thought I just had to find the right medication and all my pain would go away. I hadn't realised that even on the best medications, I might never be completely pain-free. Weirdly enough, reading that article was a wake up call for me. I had, up until then, been thinking, 'when the pain goes away, then I'll loose some weight. When the pain goes away, then I'll find a job. When the pain goes away, then I'll write that novel.' That thought pattern had to stop. I had to work out how I was going to live a fulfilling and happy life, even if the pain had to live it with me.

Sometimes, positivity is for other people's benefit. I don't think it would be much fun to be friends with me if I was constantly complaining about how awful I feel, or just generally being miserable. On the other hand, keeping a positive attitude does help me too. The more I focus on the fact that I'm in pain, the more I feel the pain, so being able to laugh and joke about stuff is a good distraction. It also helps that I find life incredibly funny, and therefore find the more ridiculous aspects of my ill health pretty funny too. At times, I think it confuses people when I laugh about the fact that I fell over in my driveway and couldn't get up, or passed out in the middle of the supermarket, but you know what? It really does come down to laugh or cry, and personally I choose to laugh (at least around other people anyway.)

:-) Little Miss Autoimmune

There's only so long you can be a bitch...

When I was first diagnosed with arthritis I was a bitch. Hmm... that kind of sounds like I was a bitch and then I got diagnosed and I wasn't anymore. What I mean is, in the first few weeks after I was diagnosed, I was so depressed and angry, I was a bitch to pretty much everyone I came in contact with.

To put this in prespective, I was diagnosed on New Years Eve. I'd planned to go to a New Years party that night. When we got out of the doctor's office that day my Mum told me alcohol was probably not going to be very good for me, but that to make myself feel better I should go out and get drunk (to this day I'm not sure whether she was joking.) I'm not really a big drinker, so this was pretty unusual advice, but I took it and spent the New Years countdown drunk and crying in my friend's stairwell.

But. There is only so long you can be a bitch.

A little while back my supervisor at work was having problems with her knee. She said being in pain was making her grumpy and she didn't understand how, being in pain all the time, I wasn't a bitch all the time. The thing is, there's only so long people will forgive you for being a bitch. After that the being-in-pain excuse wears thin and you'll find you're not only in pain, but you also have no friends.

Of course, now I think I've taken it to the other extreme. I worry so much about being a burden on other people, being in other people's way or complaining too much, that I constantly apologise. Often I apologise when things aren't actually my fault, like if someone isn't looking and walks into me. I feel because I walk with a crutch surely it must be my fault somehow. The other day my friend pointed out to me that I often apologise when things aren't even a problem, like I sometimes apologise to people for standing next to them - I don't know why, I think it's a sickness.

My new solution to feeling I complain too much is to complain more but in a more obvious way. Instead of trying to hide the fact that I'm not happy I'm just going to yell out "I'M IN PAIN" and then just carry on as if I haven't said anything. My friend has also offered to complain for me at times when I get tired of complaining. That way is more fun than complaining about complaining, although saying "I'M TIRED OF COMPLAINING! MY VOICE IS SO WHINY, I CAN'T STAND IT!" would be funny too.

Little Miss Autoimmune

Useless

I had one of those ‘I am useless days today.’ Normally I’m pretty happy with what I manage to accomplish and try to take a strengths based approach to my life (looking at my skills and focusing on what I have achieved, rather than focusing on what I can’t.)

Every so often, though I have a useless day.

They always start out the same. I have one simple task to do, usually something that is going to be a little difficult for my joints, but is still totally doable. In this case, I had to make up the spare bed for my friend who’s coming to stay.

So, I make the bed. It’s a little bit of a struggle, but I do it and I’m so excited that I have accomplished something “difficult” that I’m like ‘yeah! I can totally do anything! I’m going to now change my bed and clean the bathroom and vacuum all the floors.’

I know what you’re thinking – that’s probably like just a normal weekend for most people, but when even one of these tasks causes you pain, this is a marathon.

I got as far as taking all the bedding off my bed - at which point, my arms hurt too much to pick the bedding up again. Basically at that point my solution to the problem was to just stand there in the middle of the pile of bedding feeling sorry of myself. Fortunately, this turned out to be a solution in itself. After a while, my Dad came to check on me, saw the sorry state I was in and decided to make my bed for me.

Now, the sensible thing to do at this point would have been to give up on the idea of vacuuming and cleaning the bathroom, but no, I continued on with my plan. The bathroom turned out to not really need cleaning, as it had been done a couple of days before, it was more just a case of tidying up, so I moved on to vacuuming.

The sensible thing to do would have been to pick out the rubbish on my floor before trying to vacuum, but I was pretty tired and felt like cutting corners.

I managed to vacuum up some receipts, a plastic bag and a pair of stockings I’d left on the floor. All of these were easy to retrieve, as they got stuck, but while “retrieving” them, I managed to vacuum up an ornament off my shelf. I was pretty upset about this, as it was something I’d bought at the Katherine Mansfield house when I first visited it, so I was pretty keen to get it back. Unfortunately, I didn’t know how to open the vacuum. My solution was to just press every button on it, which achieved NOTHING. At this point I decided to give and put the vacuum away. Of course at this moment, it decides to not only open, but the top completely came off. More worryingly, a small piece fell out and none of it would go back together.

I could totally NOT do anything. I decided to stick to my strengths and spent the rest of the evening watching TV and eating chocolate while my day fixed the vacuum.

Little Miss Autoimmune

Big Orange Gloves

I decided a while back I would make Monday nights my blog posting day. It's worked pretty well, until tonight. I've just realised it's 9.30pm and I haven't even thought about a topic.

So I'm going to fall back on something that's been going around the New Zealand arthritis community this week. Having arthritis does not feel like wearing big orange gloves!

- For my non-New Zealand readers, this last week has been Arthritis New Zealand's appeal week. Arthritis New Zealand is a wonderful service. They've helped me so much with emotional and practical support. It's been really great over the past few years knowing that if I need help with anything, from advice on appropriate exercise programmes to getting subsidised taxi vouchers, I have someone I can call.

Unfortunately, the appeal adverts have not been so helpful.

They feature New Zealand celebrities trying to do everyday tasks while wearing big orange gloves. Everyone I've talked to agrees, arthritis does not feel like wearing big orange gloves.

For one thing, these ads have absolutely no mention of pain. Personally, I have almost full function of my hands, but that doesn't mean that they are not extremely painful. Yes, arthritis does sometimes make my hands fumbly. There are times when I can't do up zips or find using a knife and fork difficult but this is a minor irritation compared to the long list of other symptoms and difficulties that come with the disease. For me, things like, not being able to put my socks on myself, not being able to pick up things if I drop them, not being able to walk/get up and down from chairs un-aided would be more relevant. Then of course there is the pain and the things that go along with constantly being in pain. Lack of sleep, inability to concentrate, general exhaustion and floods of emotion.

Too many people already think that arthritis is just something you get in your hands. I do give the campaign credit for using younger celebrities. This at least hints at the fact that arthritis is not only a condition you get as you age.

I don't know if it's possible for a 30second ad to really explain what it is like to have arthritis. Even as I read over this post I'm thinking I haven't really captured it. For people who haven't experience long-term pain, it's probably quite difficult to imagine what it's like. I guess what I'd really like to see in an arthritis campaign is people with arthritis telling their stories. Maybe next year, Arthritis New Zealand can do some ads similar to the Like Minds ads (people with experience of mental illness telling their stories.) I know those ads have helped with people's understanding of mental illness. It's time for people's understanding of arthritis to change too.

Little Miss Autoimmune

Blobfish

So this week has not been a good one.

I had a really bad flare. I've had many psoriatic arthritis flares and many of them have been pretty horrible - LOTS of pain, not being able to walk, difficulty sleeping and even the simplest tasks becoming impossible. This was something different.

I spent most of the week on the couch. The fatigue hit me so bad. My muscles felt really heavy and I was so exhausted I had trouble breathing, let alone moving. My skin hurt so much that even the sensation of my clothes touching my skin was like being burnt and the muscle spasms, which are normally not a big deal, were so violent I nearly threw my laptop across the room when my leg jerked. Added to that, I developed a stutter for a couple of days - this was pretty difficult to deal with especially since I work on a mental health help line and I was rostered on that day. Needless to say I had to take some sick leave.

I wanted to come up with an analogy of what this flare felt like. The best I could do was: It's like running an all night marathon, while you have the flu and are really sunburnt (I think there should be something in there about being repeatedly punched too, but I couldn't fit it in without the desciption becoming rather rambly.)

Anyway, brain fog meant that I had some pretty interesting conversations with people. I either forgot what I was saying halfway through a sentence, or seemed to vocalise every thought that came into my head. On a good day, my conversations are kind of random, as the things I find most interesting are pretty weird, but this was a whole new level as I was verbalising all the weird things I think about as well.

Anyway, several times over the weekend I found myself describing a blobfish - I actually can't remember why, but it seemed really important at the time. My description went something like this "It's like a bowl of pudding - like if you put gelatin in milk." You'll see from the picture this is actually reasonably accurate.

What I realised later is once you've established what a blobfish looks like (preferably with a picture, not the pudding description) this is the perfect description of what a flare feels like. A flare feels like a blobfish looks.

So in future, if I'm having a flare and someone wants to know what it feels like, I will not start a list of symptoms, I will say 'go google a blobfish.' Then I will probably have to explain that this is not a more creative way of saying 'go get f*#ked' - 'cause I just realised that's kind of what it sounds like. Hmm... I think I'll have to work on the wording, but the idea is there.

Little Miss Autoimmune

Can I go to work flowchart

So the other day my supervisor asked me why I was at work when I wasn't well. I explained that when you have a chronic illness you have a new baseline of 'well' and 'not well.'

My thought process over 'can I go to work' goes something like this.

1) Am I in pain?
No - I haven't not been in pain for about 16 years, so my first point of call would be to check whether I have a pulse. If I don't and I'm dead, probably don't go to work. If I do, I'm still not in pain, and have established that I'm not paralysed or dreaming - don't go to work. A miracle has occurred - celebrate.
Yes - go to question 2

2) Is the pain so bad that I can't get out of bed/fall over as soon as I get out of bed?
Yes - don't go to work
No - go to question 3

3) Is the pain so bad that I can't walk/get stuck in a chair as soon as I sit down?
Yes - don't go to work
No - go to question 4

4) Am I so depressed about the pain that I am unable to concentrate/am constantly bursting into tears? ie am I going to be a distraction to others at work?
Yes - decide whether I can get this under control i.e. will a nice relaxing couple of hours, perhaps filled with chocolate, a walk and a bath possibly make me feel better? If no, don't go to work, if yes, try these things then reassess.
No - go to question 5

5) Am I any kind of contagious sick?
Yes - don't go to work, my work mates will not appreciate me spreading my bugs.
No - go to question 6

6) Am I some kind of sick that is not pain and not contagious? ie nauseous from medication, ulcers, dizzyness or general out of sorts-ness.
Yes - Is this a long term or short term thing? If short term, it's probably OK to miss a couple of days work, if long term, I'm going to at some point have to go to work with it. Decide whether this will be a distraction to other people/will other people end up having to look after me - if so don't go to work.
No - Go to work

This thought process sometimes changes when things I haven't thought of pop up and I have to factor them in to my decision making process and of course, this is only my physical wellness can I go to work flowchart. I have a whole other one for my mental health.

So basically, it's not as simple as 'am I well/am I sick?' There are so many degrees that sometimes I don't judge it right. Sometimes I will go to work and feel absolutely awful and have to go home. Other times I will stay home and later realise, maybe I would have been OK at work.

I'm really lucky that I have a supportive work who understand this.

The important thing is, only I can make this decision. The best way is to trust myself, and trust my instincts.

Little Miss Autoimmune

Meltdown Spaces

So, I have an idea for a new kind of business. I used the term business pretty loosely as I have no clue how you could actually make money from this idea, but I'm sure that can all be worked out later.

Have you ever noticed that when you're having a really bad day, and you get to absolute meltdown point, there is nowhere you can go and have your meltdown other your own home? I discovered this the other day. Things were not going well, I was in a lot of pain, really tired and sick and I had like a million (read three) things to do. All I really wanted to do was go home, go to bed and eat masses of chocolate. Instead I found myself limping down Courtenay Place on my way to get a blood test. On a good day I'm not that keen on blood tests so on a bad day it just put me over the edge.

I burst into tears on my way out of the building. There was no where I could go to cry in private other than Reading Courtenay bathrooms, which are by no means an ideal meltdown space. The stalls are pretty claustrophobia, and since there were other people in the bathroom, I was forced to have a very quiet meltdown, which is just not as cathartic as a noisy one.

I've heard from other people that they've had similar experinces, having meltdowns in banks, the middle of the street etc. They've all said they would all like a nice, comfortable, private place to go and cry where no one would judge you, or try to make you feel better (preferably with copious amounts of chocolate and tissues available.)

So this is my idea: I set up a chain of "Meltdown Spaces." I'm thinking I may petition John Key for some funding. He's clearly overlooked this vitial need in our community.

If I can figure out how to do it, I'm going to attach a video of some people who clearly needed a Meltdown Space. Also, the song on this video is by Rob Thomas who's wife Marisol has an autoimmune disorder. He wrote the songs "Her Diamonds" and "Ever the Same" about her experiences with it... OK, so it seems I don't know how to attach the actual video, but here's the link to it on YouTube.

http://www.youtube.com/watch?v=crKS_fMTRJo

It's my absolute favourite video.

Little Miss Autoimmune

Laughter is the best Medicine

I am not fine. I am flaring really badly and I feel awful. For the last few days I’ve been sleeping pretty much ‘round the clock, sometimes on the floor because it felt more comfortable than my bed. I’m back to the stage where I’m having falls ‘cause the joints in my legs won’t support me so in general, I am not fine!

Rather than going on about how not fine I am, I thought I’d follow my friend Mary’s suggestion and do a post of random stuff that has very little to do with autoimmune disorders and loosely connect it under the guise of ‘laughter is the best medicine.’

Mainly this is just going to be some lists of things that I think are funny. You may or may not find them funny also.

Weirdest Compliments I’ve Received

“You have eyes the colour of blue M&M’s”
From: A girl at school.
My reaction: I think I laughed at the time. Now every time I look at M&M’s I think of eyeballs.

“I like your necklace and I like your bust.”
From: A friend of a friend who I was having dinner with.
My reaction: At first I thought I’d misheard her, then I thought maybe it was a lost in translation situation as English was her second language, but no, that is what she meant. She went on to tell me why she liked my bust and that she wished she had a bust like mine. At that point I wished I had worn a less revealing top. I also think it’s funny that she tacked “I like your necklace” on the front of that.

“You look like the Virgin Mary”
From: Random drunk guy.
My reaction: To be fair, I was handing out promotional stuff for a Fringe play that had a picture of the Virgin Mary on it and he was really drunk, so I suppose it wasn’t that weird…

“I like your dancer’s calf muscles.”
From: Guy in my class at drama school
My reaction: What strikes me as weirdest about this, is I can’t remember why he was holding my calf muscle in the first place. I suspect it was some weird drama game that I’ve blocked out. Anyway, he decided I had the calf muscles of a dancer. It’s a pity that’s about all I’ve got of a dancer in me.

Misheard Song Lyrics

Song: Matchbox 20, ‘Disease’
Real lyric: ‘All my life, oh, was magic’
What I hear: ‘All my life the phone was magic’
Thoughts: I made up this whole story in my head about how he’d always loved talking on the phone to this girl until they broke up and had lots of arguments over it. I thought it was some kind of phone phobia reference. Clearly I have an active imagination.

Song: Eskimo Joe, ‘Black fingernails, red wine.’
Real lyric: ‘All of us stand and point our fingers’
What I hear: ‘I don’t understand the point of fingers.’
Thoughts: It amuses me greatly that I thought this made sense. Personally I think my version is more interesting.

Song: Bush, ‘Little things’
Real lyric: ‘It’s the little things that kill, tearing at my brain again.’
What I hear: ‘It’s the little pink pill, tearing at my brain again.’
Thoughts: I really thought this song was about antidepressants. It kind of disappoints me that it’s not.

Song: Alanis Morisette, ‘Princes Familiar’
Real lyric: ‘Please be philosophical’
What I hear: ‘Please be ever so fickle’
Song: Alanis Morisette, ‘8 easy steps.’
Real lyric: ‘I’ll show you how leadership looks, when taught by the best.’
What I hear: ‘I’ll show you how widdershins looks when taught by the best.’
Thoughts: I put these both down to the fact that Alanis takes forever to get a syllable out. It did intrigue me as to how you could teach widdershins as I’m pretty sure it means anticlockwise.

Weirdest thing I've found I’d written in my beside the bed notebook

"He smiled, exposing wisdom and teeth."
I’m pretty sure I thought that was brilliant at 3 in the morning. Not so much when I read it again when I woke up.

OK, so that one is not really a list but I thought this post was getting a bit long.

Check out Mary’s blog for her lists:

http://jumpinginpuddles89.blogspot.com/

Yay! Shameless friend promotion!

Anyway, hopefully I'll be inspired to write something more autoimmune related soon.

Little Miss Autoimmune

Interpreting the "I'm fine's"

I will always say I’m fine when asked. I can be bawling my eyes out, half unconscious in hospital or unable to breathe, but if you ask me how I am I will answer with the traditional “I’m fine, thank you. How are you?”
My supervisor at work has taken to having conversations with me that go something like this. Her – How are you? Me- I’m fine, thanks. Her – Yes, but how are you really?
I find I am not alone in this. Several guys have asked me why girls do that (though I’m pretty sure guys do it too.) So much so, that I included this conversation in my novel:

“You OK?” He sounds uncomfortable. His voice comes out with a laugh in it.
I stare in the other direction. “I’m fine.”
He scoffs. “Why do girls do that?” He pauses. I’m pretty sure he wants me to ask ‘what’ but I don’t bite. When I don’t say anything he sits down next to me.
“I’m fine, I’m fine, really I’m fine.” He mimics a high-pitched voice then laughs at his own joke.

It always seemed strange to me that people couldn’t figure out why I’m saying ‘I’m fine’ when I’m not. Then I thought about the myriad of reasons behind my ‘I’m fine’ and realised their problem.
I can’t answer the question why do girls do that, but I can explain some of the things I’m thinking when I do it.

1) I actually am fine. It confuses me greatly that you keep asking. Do you think I’m lying?
2) I’m mostly fine, but I’m hungry/tired/nervous/cold/bored/headachy. This may look like I’m not fine but it’s not really an issue
3) I mistook your genuine inquiry as to how I am for the customary greeting so I’m replying with the customary “I’m fine, thank you. How are you?”
4) I’m really not fine but I don’t want to talk about it. This is not your fault. You don’t need to do anything
5) I’m not fine, I do want to talk about it, but I don’t think you really want to know/don’t think you can deal with what’s going on for me so I’m just going to say I’m fine
6) I’m in a lot of pain. Talking about the fact that I’m in a lot of pain will make the pain worse so I’m just going to say I’m fine.
7) See number 5 – replace “in a lot of pain” with “nauseated” and replace “the pain worse” with “me throw up… possibly on you.”
8) I’m NOT fine. I have PMS. I am angry at everything and everyone right now, especially you because you keep asking me if I’m fine. I do not believe at this moment in time that my anger if irrational and if you keep asking me I may hit you (this one is recognisable by the murderous rage in my eyes.) Again, this is not your fault but I may not realise this right now. Fell free to avoid me until I’m less hormonal.
9) I’m angry. Not because I have PMS but because you have done something. Because I have issues with conflict I don’t want to say anything so I’m saying I’m fine.
10) I’m tired, sick and in a lot of pain but I feel I’ve told you that too many times over the last day/week/year/lifetime. I’ve decided to just say I’m fine so I don’t feel like I’m burdening you. Or, I think that I will feel better if I pretend I’m fine even though I’m not (go positive thinking!)
11) I’m very sleep deprived/low on blood sugar. I’m starting to think maybe you are a sea monster in disguise who will eat me if I don’t say I’m fine (OK, that one has never happened, but I do get a bit out of it when I haven’t slept/eaten so I may very well think I’m fine even though I’m clearly not.)
12) The reason I’m not fine is so incredibly stupid/embarrassing I can’t possibly tell you without you loosing all respect for me e.g. I’m crying because that pigeon over there looks sad.
13) I am fine, I’m just walking very slowly/can’t eat anything ‘cause I allergic to everything here/have hay fever or this is the first time you’ve seen me walking with a stick. These things may look to you like I’m not fine, but this is a daily thing for me. Thanks for your concern but you really don’t need to worry.

There are many more reasons but this post has gone on a bit long. Hopefully this will help with some of the “I’m fine” confusion, but probably not. They all look pretty much the same and most of the time I may not know myself which one I am.

Little Miss Autoimmune

Dramas (and a whole load of thank yous)

It's ranting time again, this time about myself not about anyone else. I've had a dramatic couple of weeks with my health. At one point I was convinced I was dying of fibromyalgia (which was interesting, since fibromyalgia isn't a fatal condition) at another I was in hospital having an allergic reaction, and to top it off I had an incredibly classy moment and threw up in the kitchen sink.

All in all, not the best couple of weeks.

As you may have guessed, I was rather sleep deprived when I thought I was dying. I had incredibly bad nausea from my medication so couldn't eat, sleep or at times form a coherant sentence (thanks to all the Warmliners and Writing Group for putting up with me) and the pain was really bad so I was loosing the plot.
I got to the point where I thought taking an entire pack of panadol would be a good idea. I wasn't suicidal, I'd just got to the point where I couldn't make sense of what I was doing. When two panadol didn't make the pain go away I thought maybe the whole pack would (thanks to Kim for talking me out of that one.)

I saw my GP a couple of days later and she and my rheumy nurse were really good. They got me switched to the injection MTX instead of the tablet, which has none of the nausea side effects. Drawing up and injecting myself wasn't anywhere near as hard as I thought it was going to be apart from my hands shaking on the first one. Unfortunately....

I woke up a couple of days after the first injection covered in hives and with my lips swollen to about four times their normal size. I wasn't terribly worried by this at first (in hindsight, I probably should have been) until Healthline told me to go to the hospital immediately and told me that I may stop breathing, so someone else needed to drive me to the hospital (thanks to Dad for the early morning run to A&E.) Fortunately, I didn't stop breathing, and the doctors told me it was unlikely to be the injection 'causing the reaction as it seemed to be a contact allergy. This was a relief for me as I'd noticed my arthritis had improved with the switch. I'd actually even run up the stairs in my house without holding on to the handrail which a few weeks ago would have been impossible (I did, of course, trip and face plant into the stairs, but let's not focus on that part...)

So, for the next week I woke up every morning with hives and looking like I'd been punched repeatedly in the face. I went through a trial and error process, trying to find out what I was allergic to. It seemed to have something to do with sleeping as it only happened when I woke in the morning. Finally, I realised what it must be. My Dad has many allergies and food intollerances. I'd inherited all of them except for his allergy to rubber... until now. Everynight I had a hot water bottle and everynight I was reacting to it. Somehow, the injection must have triggered this allergy. I'm kind of annoyed I now can't have a hot water bottle and that all my clothes with elastic in them are going to have to go, but it's nice to have an answer.

Finally, the throwing up in the sink... Not really sure what 'caused this. It's pretty unusually for me as I don't normally throw up (I'm not exaggerating, I didn't throw up for 14 years before this, even when I had food poisoning in that time.) I think it was just a combination of generally not being very well and some rather gross gluten free bread. Oh, yes, and for the record, it was the waste disposal part of the sink and I did disinfect it afterwards.

I'm hoping this is the end of the health dramas and that the next few weeks will be a lot calmer. Thanks to everyone who supported me through this.

:-) Little Miss Autoimmune

Buckle Me Up News

Just a quick post to let you know about a couple of cool things happening with Buckle Me Up, International Autoimnnue Arthritis Movement.

1) This month, to coincide with May being Arthritis Awareness month, Buckle Me Up have launched a new charity bracelette. These only cost $1.50 American, and 100% of the proceeds go to help Buckle Me Up.

To learn more about Buckle Me Up or to order one of the bracelettes, go to:

http://www.bucklemeupmovement.com/

2) Tiffany Westrich, founder of the Buckle Me Up movement, has been nominated for a Robin Hood Lionheart award. This award would potentially pay for everything Buckle Me Up needs to move forward to Not For Profit status.

Voting closes on May 16th, so go to:

http://www.robinhoodlionhearts.com/?m=profile&id=twestrich_thebucklem18213

to learn more or to vote.

Thanks

Little Miss Autoimmune

Physio

After years of avoiding it, I’ve finally started doing my physio exercises regularly. Before I knew I had arthritis I was very good at doing the physio programmes I was given (for injuries to my neck and hand) but something went wrong when it came to the arthritis programmes.

I had a bad experience with physio early on after my diagnosis. The exercises I was given took me over two hours to do each day because there were so many, and so many repetitions of each. I was given written descriptions and diagrams but no demonstration or explanation so I wasn’t sure I was doing them correctly.

My pain got worse each time I did them and lost range of movement. The physio-therapist was testing my strength each week and that went down dramatically. Eventually, I just stopped going to see her.

Since then, I’ve been given two new physio programmes by the hospital which I have ignored. Finally, I decided something had to change and started doing them.

Surprisingly, I’ve actually really enjoyed doing them. They only take about an hour all up and I can do them while watching TV. I feel like they’re helping both my joints and my fitness. Again, there were only written instructions and diagrams but they were much clearer than the last lot and there were warnings about stopping as soon as it becomes painful. In a couple of places, there were too many repetitions listed and things became too painful to continue. I had one day of not being able to turn my head after doing too many neck stretches but I cut the numbers down and things are now going well.

I was thinking about that first physio-therapist the other day. At first I was kind of annoyed about the whole thing. I had an argument in my head with her (which was interesting since I can’t remember her name or what she looked like.) Then I stopped and thought about my part in the whole thing.

At no point did she hold a gun to my head and say: “Do these exercises or I will shoot!” (imagine this said in a vague accent that comes not from any country but from daytime-soap-opera-land.)

I knew those exercises were doing damage but I kept doing them. I knew I didn’t know how to do them properly but I didn’t ask, and I knew there were too many repetitions but I didn’t adjust the numbers.

I was just as much, if not more to blame for the damage the exercises did to my joints. Often, I think that I have to defer to anyone in a medical profession simply because they are in the medical profession. I forget that they are still human and above all that they are not psychic. If something is wrong, I need to tell them, ask questions or talk through the problems with them. Otherwise they can’t do anything about it and neither can I.

Little Miss Autoimmune

Random Acts of Kindness

OK, so I felt like a bit of a bitch after yesterday's post.

Moral of the story: don't post things on the internet when you're feeling angry. I still agree with what I said, I just wonder if I presented it in the best way.

I do understand where the guy was coming from, and while it hit a nerve with me, I appreciate that he was trying to help.

I decided to put myself in a more positive frame of mind by thinking about the random acts of kindness I have received recently from some very wonderful members of the public.

Without these, many of my days would have been a much bigger struggle than they ended up being.

* Many lovely people have given up their seats for me at bus stops and on buses. Sometimes they've even given up their seat when there have been others available, but theirs was just that little bit closer.

I don't think I can even explain how much I appreciate this. Being able to sit down for five minutes, or while on the bus makes such a difference to my day. In fact, it makes my day possible. Thank you so much.

* A man in the supermarket offered to help me with my shopping because he thought it might be a struggle for me to manage it. I'm not sure if he worked at the shop or not but, either way, it was was very thoughtful of him.

As it happened, I was only buying a packet of chippies, so I politely declined the offer.

Even so, it was a kind gesture and one I'm thankful for.

* A teenage boy picked up my shopping for me when my biodegradable bag biodegraded on the bus.

There was no way I would have been able to pick it up myself. He saw I was struggling and helped me out. I'm not really sure what I would have done without him. It may not seem like much, but believe me, it made a huge difference to me.

* The people in the blood test office always take my blood in the small room off the waiting room because it's closer. They were also really wonderful in cleaning me up and looking after me when my arm randomly decided to start bleeding out.

* When I left the blood test office that day, I collapsed in the foyer and many lovely strangers looked after me. One woman even offered to go buy me chocolate and another walked down the road with me back to my writing space.

I wonder if any of the "givers" of these random acts of kindness actually remember doing them. Possibly the people who found me on the floor in the foyer do but I bet the others forgot about it pretty quickly. The people who gave up their seats probably didn't even think about it again.

For me, these are things I won't forget because they made such a huge difference to my day. I can't repay them, but I can pay it forward and start the cycle of random kindness again. I know it's very unlikely that any of those people will read this but even so, I hope they know how big a difference they made.

Little Miss Autoimmune

Judgements

I haven’t written in a while because I haven’t felt like I’ve had anything particularly interesting to say… that is until today.

I basically just want to have a rant, and this seemed like the best place to do it. If you’re looking for something uplifting, this probably isn’t it. Sorry.

While sitting at a bus stop this afternoon, I (very politely) tore strips off a stranger for the judgements he was making about me and my life. Note: I stress the ‘very politely’ part. I don’t really do conflict very well, and the only reason I said anything at all was because I was already in a rather crappy mood. Actually, I didn’t really tear strips off him either but I did tell him what I thought which goes against all my natural instincts.

Often completely strangers will come up to me and start talking. I’m told it’s because I have an open face and on the most part I don’t mind. What they have to say is usually interesting, if sometimes a little weird. It does bug me a little that even more people talk to me now I walk with a crutch. People use it as an opening to start talking, which is fine I guess, but I don’t like the judgements they make about my life because of it.

This afternoon a guy sat down next to me and, pointing to my stick, asked me if I was struggling today. I didn’t feel like going into an explanation so I just said it was permanent, that being the simplest answer. He shook his head and told me nothing was permanent. I just shrugged which appeared to be the wrong answer.
“No, don’t give up, nothing’s permanent.”
I shrugged again. “It’s not a bad thing.”
“I didn’t say it was a bad thing, I just said nothing’s permanent.” He shook his head. “You shouldn’t give up; you should always strive for something better. Never give up hope.”
At this point I got really annoyed. “Who says a life walking without a crutch is better than one walking with a crutch? I’m still doing everything I want to, so don’t make judgements about my life.” (Or something similar – can’t remember my exact words but this is approximately what I said.)

At that point he laughed and said he didn’t have an answer for that. Then, as I got on the bus he called me a cripple. I wasn’t expecting that and it made me feel rather rubbish so I started crying (fortunately I have really big sunglasses so no-one noticed.)

If I had been in a better mood, I probably wouldn’t have minded what he said. In his own way he was trying to help… well maybe up until the cripple part, but I got frustrated by the assumptions he was making.

In the past I’ve had a butcher tell me only problem was I didn’t have enough hope, an evangelical guy tell me God could heal me if only I had enough faith and a gym instructor berate me for the low calcium levels in my diet. All of those bothered me, mainly because they were all said within minutes of meeting me, before they could possible form a realistic opinion of my life or condition.

When I talk to other people with arthritis, it always comes up that what we want is understanding, not pity or “medical” advice. I’d also rather that people didn’t make assumptions about how I feel, or how I life my life. Yes, I’m in a lot of pain and yes, I would like that to go away, but that in no way means I have a sub-standard life or that I must wait for something better to come along before I can start living. THIS is my life. Please don’t diminish that.

Little Miss Autoimmune

Nausea Dos and Don'ts

Lately I’ve had really bad nausea from my arthritis medications. I found I go a bit crazy when I feel sick all the time and especially when my blood sugar gets out of whack. Today I’m not feeling so bad so I thought I’d write myself a list of reminders for what to do if the nausea comes back. Hopefully this will keep me slightly saner.

Dos

Do try to eat even if you feel sick. You’ll feel worse if your blood sugar gets low. Eat small meals and choose healthy foods. Avoid greasy or milky foods, or anything that makes you feel particularly sick.

Do ask for help if you need it. If you don’t tell your medical team you’re not feeling well they can’t do anything about it.

Do let the important people in your life know you’re not feeling well. Often you’ll want to prove you’re fine and don’t want to feel like you’re being a burden or like you’re dumping on people but on the most part they’ll want to support you. You need that support and if you need help, or can’t meet work or social commitments – they aren’t mind readers. They need to know what’s going on to be able do anything about it.

Do get plenty of sleep. Nausea is amazingly exhausting. Give yourself a break!

Don’ts

Don’t try to work out whether you feel nauseous or nauseated. This is not a time for grammar and the more you think about feeling sick, the more you will feel sick.

Don’t start thinking about the weight you might loose while sick. Yes, you are eating less; yes, you might loose weight but that’s not what you should be focusing on. This is not a clever or healthy way to drop kilos. It’s a slippery slope and what you should be focusing on is trying to feel and be healthy.

Don’t over-exercise. It’s important to keep your joints moving but you’re likely to be too tired and too low on calories to do any more than that.

Don’t take on too much and if you can’t get much done on current projects don’t be too hard on yourself. Try to keep doing the things you love but keep in mind your stamina will be low. If you can only manage a shorter period of time, that’s OK. If you can’t do anything at all, just remember this won’t last forever. You can come back to things later.

There are probably other things that should go on here but I think this will do for a start. As I’m reading over this I think maybe these are dos and don’ts I should adopt for life, not just for times when I’m nauseous. Or maybe they should be a list of Autoimmune Dos and Don’ts. Either way, I’ll try to keep them in mind next time I’m sick.

Little Miss Autoimmune

Non-disabled parkers

OK, so you might be looking at the picture and thinking I’m about to berate anyone who parks in disabled parks with out a permit. I’m not, I promise, but I am going to tell you about how it affects me when people park in designated parks when they don’t need to.

Before I had arthritis, if we (my family and I) couldn’t get a park close to where ever we were going we could just park a few streets away or in a nearby parking building and walk the rest of the way. Now, if I can’t get a park close enough I simply can’t go.

When I was younger, and by younger I really mean pre-diagnosis days, if we went to the library and couldn’t get a park in the parking building underneath we would park somewhere in town and walk the rest of the way. The other day we went to the library and couldn’t get a park underneath, so we had to go home. It’s as simple as that.

Having said that, sometimes it’s not an option for me to just go home. When we went to the supermarket the other day all the disabled parks were full. Some with people who had permits and some with people who did not. We really needed groceries so we parked on the other side of the car park. It was a particularly bad day for me, so by the time I got to the supermarket doors I was so tired and in so much pain I had to sit down for a good fifteen minutes before I could even start my shopping. When I finally got into the supermarket I nearly passed out in the middle of an aisle. I couldn’t concentrate on what I was doing and by the time I got home felt too sick to do anything else that day.

This may not sound that bad to you. So I can’t go to the library, or find doing my shopping exhausting. It may not seem like a big deal but things aren’t that easy when you’re in pain, or in a wheelchair, or on crutches, or simply can’t walk that far. Please don’t make it any harder. Even if you’re only parking for five minutes, that could be the five minutes where someone who needs that park arrives, drives around, gives up and goes home.

I don’t want to be preaching to the converted so if you don’t park in disabled parks when you don’t need to: good for you! I hope you enjoyed reading this anyway.

Little Miss Autoimmune

Juice Cocktails

I know, I know, it’s been ages since I’ve written anything. I don’t really have an excuse. I could say it was because my pain has been really bad or that I’ve just been busy which, to an extent, would both be true but the real reason is it just slipped my mind.

Anyway, an update: I said in my first post that this blog would be following my journey through trying to get healthy. Since then I’ve managed to keep up with the exercise – aqua-jogging 2-3 times a week – and that’s made some difference to my pain levels. I definitely notice on the days when I do it I’m moving a bit better.

The daily chair yoga seems to have mysteriously disappeared. I’m not sure where it went. One day it was there, the next it wasn’t. I’m not quite sure what made me stop. I actually really enjoy it and it’s not even like I have to leave the house to do it. I think it’s just one of those things that once you get out of the habit it’s hard to start again. It was making a difference to my joints so I’m going to try to get back into it this week.

I have now started what I’m referring to as the “Crazy Pain Diet :-)” I usually follow that with a smiley face ‘cause it makes me feel slightly better. Basically it consists of cutting gluten, red meat, sugar and dairy out of my diet. I was already doing the no gluten, no red meat half of the diet but dairy and sugar are the harder ones to give up. In the past when I’ve done this diet I’ve noticed a significant decrease in my pain levels but it is really hard to do. This time I’ve tried to make it easier on myself. I’ve got a friend doing it with me (she also as a pain condition and has found the diet helpful) and have other friends who know I’m on it and are supporting me.

The first day was really hard. I was dreaming about food and nearly in a panic about the fact that I couldn’t have chocolate. It’s not like I eat chocolate every day but knowing that it was going to be months before I had some made me want to give up. I’m on day 9 now and feeling a lot better. The cravings seem to have stopped, though as of yet, the pain hasn’t got any better. I know it’s early days but it does make it harder to keep to the diet when I’m not yet seeing results.

Finally, an arthritis tip: I’ve been drinking carrot, pineapple and ginger juice from the local juice bar. Pineapple is a super food for the joints and ginger is great for inflammation. The carrots… well I kind of just needed something to bulk it out but it is so yummy and I feel very virtuous drinking it. If you have a juicer (or a local juice bar) I would really recommend it.

Little Miss Autoimmune

Buckle Me Up

I remember sitting in a counselor’s office telling the counselor I felt like a freak. When he asked why I said it was because I didn’t know anyone else with arthritis. All my friends and workmates were very active and sporty whereas I had trouble just standing up. Because I was so tired and in so much pain I often didn’t feel up to socializing and I didn’t have the energy that most 20 somethings did. I felt like an old woman. When I would explain to my colleagues that I couldn’t do certain things, sometimes things that were a part of my job, I would get looks that said “oh really?” or “whatever - you’re just being lazy.”
The counselor explained to me that he didn’t think I was a freak but that I seemed very isolated. He suggested that I looked at getting in touch with other young people who had arthritis but I had no idea how to do it. It wasn’t until recently, when I got in touch with “Buckle Me Up,” that some of those ‘freak’ feelings began to go away.

What if autoimmune arthritis conditions were universally understood, so you never again would hear, “well you’re too young to have that” or “why don’t you take some aspirin to make the pain go away” or “but you don’t look sick”? Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing obnoxious, debilitating fatigue that is not necessarily remedied from rest or a good night sleep? What if there were in-depth, age-appropriate exercise programs in place that catered to different levels of disability and fitness preferences? How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients? What if there were a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability? Hopefully beginning in 2010 these wishes will start to become a reality.
The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*. Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.
They are not in competition with any existing charity. Matter-in-fact, part of the mission is to partner with current organizations to assist with existing autoimmune arthritis awareness efforts. Recently they have joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. Founder, Tiffany Westrich, is personally working with the Arthritis Foundations “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an intricate role. In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”. Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009). They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.
If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. Just like you may see while checking out at grocery stores and other retail establishments, the IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.

To view a complete list of start up costs and to send your $1 donation, please visit www.BuckleMeUpMovement.com/donate.
“Be the change you wish to see in the world.” -Ghandi

*Currently, we have found the following conditions officially classified as Autoimmune Arthritis.
o Rheumatoid Arthritis
o Juvenile Arthritis
o Psoriatic Arthritis
o Reactive Arthritis
o Ankylosing Spondylitis
o Scleroderma
o Systemic Lupus Erythematosis

Molly Stick

A couple of months ago I had a really bad flare up of my arthritis. Since then I’ve been walking with a stick. I decided that instead of resenting my stick I would give it a name and treat it as a friend rather than an enemy. Also, if you’ve read the book ‘Howl’s Moving Castle’ you’ll know that in it the main character Sophie talks her walking stick to life. Now I’m not saying that will happen to mine but if I don’t at least give it a name it definitely won’t.

I started off with my Grandmother’s old walking stick which I named Glinda after the good witch from ‘The Wizard of Oz.’ Unfortunately, Glinda wasn’t quite right for me. I had a couple of falls when walking with her and the physio from the hospital suggested I’d be better with a crutch. The hospital lent me a temporary crutch until I could get a permanent one. I named him Kody after the Matchbox 20 song. You see, just before my flare up I’d been doing a facebook quiz where you had to answer questions with the titles of songs from one artist. I think I kind of jinxed myself, as one of the questions asked my favourite form of transportation. Matchbox 20 have no song titles with any form of transportation in them so I chose the title that seemed closest – ‘Crutch’ – not knowing that in a few weeks I would be unable to walk without one.

When my permanent crutch arrived I was a little out of inspiration. There’s only so many times you can name inanimate objects without running out of names. I left it to my parents. My Mum chose the name “Molly” and my Dad added the sir name “Stick” later. From then on she has been known as Molly Stick (see picture).

I know I’m supposed to be writing about exercising and eating healthy but I thought I’d tell you about Molly Stick first to put things into context. I often forget to explain to people that I have autoimmune disorders and confuse them by making references to my hands not working or giving myself injections. I think now people can see Molly Stick they understand a little more but I have got some strange looks in the past.

I hope the holiday season has been treating you well and I’ll be writing more soon.

Little Miss Autoimmune