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

First Ever Post

Hello! So some of you may be asking: ‘What does “autoimmune” mean? It sounds like a disease. If it’s a disease then why does the blueberry-shaped Little Miss character look so healthy?’ OK, so you may not be asking that exactly but those are the sorts of questions I want to try and answer in this blog.

Firstly, Who am I? I’m a children’s writer from New Zealand. I work as a help-line peer support worker for a mental health service.

Why Little Miss Autoimmune? I have at last count five autoimmune disorders: Psoriasis and eczema, coeliacs, hashimoto’s disease and psoriatic arthritis.

Now, What is an Autoimmune disorder? This is the way I like to describe it to people: Your immune system gets a little confused. Instead of just attacking diseases, it starts attacking healthy cells.

As you might have noticed, with the exception of the eczema and psoriasis character who’s skin is affected, none of the characters above look particularly unhealthy. Often you can’t see the effects of autoimmune disorders.

What are the symptoms?Rather than describing all the possible symptoms, I thought I’d tell you how these disorders effect me on a daily basis.

Psoriasis and eczema – Both of these affect my skin. For me, both are itchy (in some people psoriasis is not itchy) and cause dry flaky skin. When I have a flare up I can get bad skin infections. My eczema is aggravated by certain things – some foods; the glue in shoes, which means I have to wear either slippers or plastic shoes (I know, not the most fashion conscious); and sunlight, which means I have to be very careful about spending time in direct sunlight.

Coeliac’s disease – This is an allergy to gluten (a protein found in wheat, barley and oats.) If I don’t avoid these foods I get an upset stomach and pain. I can also get sore skin and trouble with my blood sugar levels. If I too much gluten I get confused, depressed, shaky and can even get to the point where I have trouble speaking.

Hashimoto’s disease – This affect the thyroid, causing low levels of the hormone produced by the thyroid gland. I have to admit I don’t really know a lot about the disease, despite having had it for around ten years. It causes, among other things, tiredness, weight gain, depression and other psychological symptoms.

Psoriatic Arthritis – This affects the joints. Of all the autoimmune disorders I have, this is the one that affects me the most. I have this in all my joints. It causes pain, stiffness and swelling. Because of it, I am unable to do a lot of things – getting down to the floor, lifting/carrying things, walking without a crutch – and find many other things difficult.

This Blog
Over the next few months I’m going to be starting a diet and exercise program to try and improve my health. At the moment, I am not fit and I tend to just eat whatever I feel like. This blog will show my journey with this and probably some random tangents about anything interesting happening in my life. Along the way I hope to raise awareness about autoimmune disorders.

Thanks for reading

Little Miss Autoimmune