The art auction is this weekend! You can bid on items in live auction or buy prints/cards from the Fine Art America gallery. All pieces donated by either patients with autoimmune arthritis, or members of their whanau. Read more below:
The International Autoimmune Arthritis Movement (IAAM)started as The 'Buckle Me Up" Movement in 2009, created as a way to raise awareness by rebranding the face of 'arthritis' with young and trendy jewelry (original “buckle bracelet” shown on left). In just a month, the word of this rebranding went International and the need for global awareness became apparent. On May 7th, 2011 (ironically also the 40th birthday of the Founder and CEO) notification was received that, what is now called the International Autoimmune Arthritis Movement, official 501c3 nonprofit status was granted. This weekend marks their first fundraiser, using donations to fund the start up costs necessary to get this nonprofit up and running!Continue reading on Examiner.com The online autoimmune arthritis art show & auction - National Autoimmune Arthritis Examiner.com http://www.examiner.com/autoimmune-arthritis-in-national/the-online-autoimmune-arthritis-art-show-auction#ixzz1SDSOhqh4
Saturday, July 16, 2011
Wednesday, July 13, 2011
Clarity
Hi there,
I decided I'm going to be lazy again, and just post the article I wrote for work up here, instead of writing a new post. Saves on coming up with extra inspiration!
When I saw the topic for this month’s Links* (clarity,) I was trying to think about what helps me to think clearly. I struggled to come up with an answer to that question, other than the obvious things – time, space, someone to talk things through with.
What I did keep coming back to me were the things that make me not think clearly, and the fact that when those things are influencing me – I just can’t see it.
My sister and I were talking recently about our teenage years. She was telling me about how when she was a teenager, our parents (and other adults) would say things like “I understand this is a very confusing time for you,” or “I understand you’re feeling very emotional right now.” Both of our reactions to these kinds of statements were pretty similar “I’m not confused! I’m not emotional!”
It’s only looking back that now, my sister and I could say: “Wow, we were really confused and emotional!”
My point is, when I’m in the middle of a high stress time, it doesn’t matter how clear headed the people around me are: I know I’m just not going being able to see it myself until I come out of it.
At the end of last year, I was very physically sick. Looking back, I can see that my thinking and ability to make decisions was very influenced by how I was feeling. I can also see that if someone had told me that at the time, I wouldn’t have been able to hear it. Now, while I’m well, I know that even if I get sick again, it will be okay. It will be horrible, and uncomfortable and unpleasant while I’m sick, but that eventually the flare will end and I’ll be all right again.
Ask me if I know that in the middle of the flare and my answer will probably be: “I’m not confused! I’m not emotional!” (or words to that effect.)
That’s why I like to write letters to myself. The clear-headed me can remind the non-clear-headed me, that I’ve felt like this before and that it’s not going to last forever. A while ago when I came out of a bad episode of nausea I wrote a list of nausea Dos and Don’ts for myself. (see the list here )This really helped me the next time I felt sick, because I knew that they came from me. Not from someone outside, who just thought they knew how I was feeling.
I probably won’t ever feel the same way I did when I was a teenager again, but I wrote something for 15 year old me anyway – just because I wished I could.
Letter to my 15 year old self
I won’t tell you
that it will get better.
You won’t believe me
and that disbelief
will make you sad.
I won’t tell you
that you’re not as fat
as you imagine.
You will only hear
what you want to
and will believe I’m saying
“You are fat, just not as fat
as you imagine.”
Someday, you will learn
to hear what people
are really saying
I won’t tell you
to try and focus
on the good, to let
the bad stuff go.
That bad stuff
will shape you life
in ways you can’t
understand yet.
Some of it will
lead you down paths
you don’t like
but those paths are
just that.
They are not the destination.
I will tell you
that you’re doing okay.
You probably won’t believe
that either
but I still want
to say it.**
:-) Little Miss Autoimmune
* 'Links' is the name of our work newsletter
** I wrote this poem as part of a thirty day poetry challenge. You can check out the rest of the poems here
I decided I'm going to be lazy again, and just post the article I wrote for work up here, instead of writing a new post. Saves on coming up with extra inspiration!
When I saw the topic for this month’s Links* (clarity,) I was trying to think about what helps me to think clearly. I struggled to come up with an answer to that question, other than the obvious things – time, space, someone to talk things through with.
What I did keep coming back to me were the things that make me not think clearly, and the fact that when those things are influencing me – I just can’t see it.
My sister and I were talking recently about our teenage years. She was telling me about how when she was a teenager, our parents (and other adults) would say things like “I understand this is a very confusing time for you,” or “I understand you’re feeling very emotional right now.” Both of our reactions to these kinds of statements were pretty similar “I’m not confused! I’m not emotional!”
It’s only looking back that now, my sister and I could say: “Wow, we were really confused and emotional!”
My point is, when I’m in the middle of a high stress time, it doesn’t matter how clear headed the people around me are: I know I’m just not going being able to see it myself until I come out of it.
At the end of last year, I was very physically sick. Looking back, I can see that my thinking and ability to make decisions was very influenced by how I was feeling. I can also see that if someone had told me that at the time, I wouldn’t have been able to hear it. Now, while I’m well, I know that even if I get sick again, it will be okay. It will be horrible, and uncomfortable and unpleasant while I’m sick, but that eventually the flare will end and I’ll be all right again.
Ask me if I know that in the middle of the flare and my answer will probably be: “I’m not confused! I’m not emotional!” (or words to that effect.)
That’s why I like to write letters to myself. The clear-headed me can remind the non-clear-headed me, that I’ve felt like this before and that it’s not going to last forever. A while ago when I came out of a bad episode of nausea I wrote a list of nausea Dos and Don’ts for myself. (see the list here )This really helped me the next time I felt sick, because I knew that they came from me. Not from someone outside, who just thought they knew how I was feeling.
I probably won’t ever feel the same way I did when I was a teenager again, but I wrote something for 15 year old me anyway – just because I wished I could.
Letter to my 15 year old self
I won’t tell you
that it will get better.
You won’t believe me
and that disbelief
will make you sad.
I won’t tell you
that you’re not as fat
as you imagine.
You will only hear
what you want to
and will believe I’m saying
“You are fat, just not as fat
as you imagine.”
Someday, you will learn
to hear what people
are really saying
I won’t tell you
to try and focus
on the good, to let
the bad stuff go.
That bad stuff
will shape you life
in ways you can’t
understand yet.
Some of it will
lead you down paths
you don’t like
but those paths are
just that.
They are not the destination.
I will tell you
that you’re doing okay.
You probably won’t believe
that either
but I still want
to say it.**
:-) Little Miss Autoimmune
* 'Links' is the name of our work newsletter
** I wrote this poem as part of a thirty day poetry challenge. You can check out the rest of the poems here
Sunday, July 3, 2011
IAAM Art Auction
Hi again.
I posted earlier about the IAAM Art Auction - well here's the poster :-) (please excuse my technologically challengedness, if it is a strange size or anything like that!)
I'm donating a couple of pieces - I was working on one last night while puppy-sitting my sister's hyperactive chihuahua. He was convinced that I was actually making some very-tasty, extra-special food, that I wasn't sharing, and not just mixing paint!
Anyway, I'll post again once the auction is all go
:-) Little Miss Autoimmune
Tuesday, June 21, 2011
IAAM News
I’ve blogged before about the wonderful work IAAM (Buckle Me Up) are doing in raising awareness for autoimmune forms of arthritis. Well, as of 7th May IAAM is officially the first 501c3 nonprofit organisation, solely benefiting autoimmune arthritis!
You can check out IAAM’s website, including new initiatives like The Awareness Hotline and Wellness pages, here:
You can check out IAAM’s website, including new initiatives like The Awareness Hotline and Wellness pages, here:
Also, if you’re an artist (or in any way artistically inclined) and have any form of autoimmune arthritis, IAAMs first fundraiser is going to be an online art auction in July of art and crafts made by the hands of those with autoimmune arthritis. You can see more details on the home page, or email tiffany@IAAMovement.org for more information.
If you’re not so artistically inclined, but would still like to help with this fundraiser, do check out the page and maybe place a bid on some of the pieces once it’s all go.
Final plug – as IAAM are so newly a nonprofit there are a whole load of start up costs needing funding (website, email newsletter service, phone line, mailbox, advertising and PR costs, general office supplies and initial programs) and also organizational costs, such as salaries, program development and finalizing official documentation.)
If you’d like to make a direct donation (remember – they’re tax deductable! and no donation is too small) go to:
If you’re not so artistically inclined, but would still like to help with this fundraiser, do check out the page and maybe place a bid on some of the pieces once it’s all go.
Final plug – as IAAM are so newly a nonprofit there are a whole load of start up costs needing funding (website, email newsletter service, phone line, mailbox, advertising and PR costs, general office supplies and initial programs) and also organizational costs, such as salaries, program development and finalizing official documentation.)
If you’d like to make a direct donation (remember – they’re tax deductable! and no donation is too small) go to:
http://www.iaamovement.org/Home_Page.php
or you can mail a check to:
IAAM
646 S. Barrington Avenue, Los Angeles, CA 90049
Note: if donating with check please provide an email address where we can send your tax receipt.
Finally, you may be wondering why the picture. I was talking with my friend Mary about the online art auction. I said I would donate a piece, but I just wasn’t sure what. This wearable picture book came up (don’t worry, I won’t really be donating this!) My sister and I made this for the Wearable Arts Competition last year, and this is a picture of me and Mary wearing it. Although I have no plans to try and sell this in an auction, we decided it really was quite an apt image. Having autoimmune arthritis can feeling like you’re carrying a huge burden (a giant wearable castle perhaps?) but you don’t have to be in the castle alone. Having an organization like IAAM can help carry the load…
All right, I’ll leave you with that rather tenuous metaphor and the request that you really do check out the website and make a donation.
:-) Little Miss Autoimmune
or you can mail a check to:
IAAM
646 S. Barrington Avenue, Los Angeles, CA 90049
Note: if donating with check please provide an email address where we can send your tax receipt.
Finally, you may be wondering why the picture. I was talking with my friend Mary about the online art auction. I said I would donate a piece, but I just wasn’t sure what. This wearable picture book came up (don’t worry, I won’t really be donating this!) My sister and I made this for the Wearable Arts Competition last year, and this is a picture of me and Mary wearing it. Although I have no plans to try and sell this in an auction, we decided it really was quite an apt image. Having autoimmune arthritis can feeling like you’re carrying a huge burden (a giant wearable castle perhaps?) but you don’t have to be in the castle alone. Having an organization like IAAM can help carry the load…
All right, I’ll leave you with that rather tenuous metaphor and the request that you really do check out the website and make a donation.
:-) Little Miss Autoimmune
Sunday, May 29, 2011
Pacing, planning and prioritising....
I am again, sitting on the couch in my pyjamas, though this time I am actually working (and by working, I mean waiting for a call to come through.) Note: if you ring a mental health helpline, the person you speak to may very well be wearing pyjamas. It's kind of an industry thing :P
Anyway, I wrote a blog post last night, but then the internet stole it and won't give it back.... or maybe I'm just really technologically challenged. The point is, I was too tired to re-write it and in the interest of not exhausting myself, I'm just going to post an article I wrote for my work newsletter instead. It's about pacing, so I thought it was apt...
When I think of self-care, I usually think of adding things to my day: adding exercise, eating healthy foods, getting enough sleep. Recently I’ve realised self-care is just as much about saying “no” to things. Now, I’m not talking about the obvious – saying no to cigarettes, alcohol, stress etc. (although that’s a part of self-care too!) What I mean, is saying “no” to those things that suck up our time and leave us collapsed on the couch at the end of the day.
When I’m trying to explain what it’s like to live with a chronic illness, I often talk about Christine Miserandino’s “spoon theory”. The essence of this theory is that, when you live with a chronic illness, everything you do costs you a “spoon.” Under normal circumstances, a healthy person will have an almost unlimited supply of “spoons”. They don’t need to worry too much about overdoing it and running out. A person with a chronic physical or mental illness will have a limited amount of “spoons”. To make sure they still have enough energy to make dinner at the end of the day, they will need to keep an eye on how many “spoons” they use up during the day.
This is where pacing, planning and prioritising come in. I know that for me to stay healthy, I need to really think about what I include in my day. There are things that I have to do because... well, they’re just facts of life – work, study, chores, cooking. There are things I need to do for my health – exercise, physio, doctors appointments, and then there are things that I want to do – creative projects, socialising, retail therapy etc. Prioritising doesn’t mean anything that’s not 100% necessary gets chucked off the list; it just means I have to work out how I’m going to fit it in without running out of “spoons”. It might mean that I choose to meet up with friends on the days I’m not working. Or it might mean that if I’ve got a doctor’s appointment and a deadline on a writing project, the cleaning might have to wait until tomorrow. If I know I’ve got a busy day coming up, I’ll make a big meal the day before so I can have leftovers for dinner rather than having to cook after a long day.
Learning to pace myself has been a hard journey. Sometimes I’ll wake up feeling like I have an unlimited number of “spoons” only to get halfway through the day and realise I just don’t have the energy to get everything done. Then there are the days where unexpected things happen, and my energy is taken up with things I hadn’t planned for. Either way, the next day I have to come back to it: pacing, planning and prioritising. It’s a slow journey, but in the end, it will all get done. Just maybe not as quickly as I thought.
Check out spoon theory at:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Little Miss Autoimmune :-)
Anyway, I wrote a blog post last night, but then the internet stole it and won't give it back.... or maybe I'm just really technologically challenged. The point is, I was too tired to re-write it and in the interest of not exhausting myself, I'm just going to post an article I wrote for my work newsletter instead. It's about pacing, so I thought it was apt...
When I think of self-care, I usually think of adding things to my day: adding exercise, eating healthy foods, getting enough sleep. Recently I’ve realised self-care is just as much about saying “no” to things. Now, I’m not talking about the obvious – saying no to cigarettes, alcohol, stress etc. (although that’s a part of self-care too!) What I mean, is saying “no” to those things that suck up our time and leave us collapsed on the couch at the end of the day.
When I’m trying to explain what it’s like to live with a chronic illness, I often talk about Christine Miserandino’s “spoon theory”. The essence of this theory is that, when you live with a chronic illness, everything you do costs you a “spoon.” Under normal circumstances, a healthy person will have an almost unlimited supply of “spoons”. They don’t need to worry too much about overdoing it and running out. A person with a chronic physical or mental illness will have a limited amount of “spoons”. To make sure they still have enough energy to make dinner at the end of the day, they will need to keep an eye on how many “spoons” they use up during the day.
This is where pacing, planning and prioritising come in. I know that for me to stay healthy, I need to really think about what I include in my day. There are things that I have to do because... well, they’re just facts of life – work, study, chores, cooking. There are things I need to do for my health – exercise, physio, doctors appointments, and then there are things that I want to do – creative projects, socialising, retail therapy etc. Prioritising doesn’t mean anything that’s not 100% necessary gets chucked off the list; it just means I have to work out how I’m going to fit it in without running out of “spoons”. It might mean that I choose to meet up with friends on the days I’m not working. Or it might mean that if I’ve got a doctor’s appointment and a deadline on a writing project, the cleaning might have to wait until tomorrow. If I know I’ve got a busy day coming up, I’ll make a big meal the day before so I can have leftovers for dinner rather than having to cook after a long day.
Learning to pace myself has been a hard journey. Sometimes I’ll wake up feeling like I have an unlimited number of “spoons” only to get halfway through the day and realise I just don’t have the energy to get everything done. Then there are the days where unexpected things happen, and my energy is taken up with things I hadn’t planned for. Either way, the next day I have to come back to it: pacing, planning and prioritising. It’s a slow journey, but in the end, it will all get done. Just maybe not as quickly as I thought.
Check out spoon theory at:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Little Miss Autoimmune :-)
Saturday, May 21, 2011
Shoulds don't work for me...
There's a part of me that feels silly, sitting down to write a blog post at this stage. This is only partly due to the fact that as I write, I'm sitting on my couch wearing pyjamas - that can only be described as reminisant of the ones Bridget Jones wears during her All by Myself meltdown - fluffy pink bed socks and an over-sized dressing gown. See, this doesn't embarrass me. Despite the fact that I'm still in my twenties, this is pretty much an average Saturday night for me. After years of thinking "I should be doing what other people my age are doing" or more realistically "I should pretend that I want to be doing what other people my age are doing" I have come to the realisation that "shoulds" just don't work for me. I'm happy sitting on my couch in cozy clothes on a Saturday night, and if I'm happy, why "should" I be doing something else.
But I digress...
The reason I feel silly writing a blog post at this stage, is that it has been *gulp* five months since I posted anything. I gave up even pretending I was going to post soon, because I could tell it just wasn't going to happen.
When I last wrote, I was incredibly sick. Both the joint symptoms and systemic symptoms of my arthritis were out of control... things got pretty hairy there for a while. I was having trouble... well doing anything really. Even getting up to go to the bathroom was a huge struggle, especially as I was having frequent falls. Simple tasks had become incredibly difficult and solid food had become a distant memory as the pain and stiffness in my jaw made chewing near impossible (eating icecream and soup for months on end, is not as fun as it might seem!)
Added to this, I'm prone to periods of insomnia and the constant pain was making falling/staying asleep hard to say the least. Crazy Helen was starting to emerge...
But, it's not all bad news. In fact, what happened next was about the best news I could have hoped for. I'm currently in a partial theraputic remission*
A stint on pain killers helped with the pain levels and sleep problems (thus saving my sanity!) but they couldn't do much to help the systemic symptoms. Among other symptoms, I had to have several weeks off work as the inflammation in my voice made shifts on the phone impossible (no-one ringing a helpline in crisis really wants to talk to creepy-croaky voice lady) and I had near constant double vision.
Fortuately my nurse managed to get me switched from Humira injections to Enbrel. Up until this point, I'd been told there were no more medical options for me. My doctor (and my nurse too, really) believed my condition was drug-resistant. Therefore switching me was going to have no effect. My nurse insisted on at least trying (she told me later that after arguing with my doctor he ended up saying "fine, do what you want, but it's not going to work.")
12 hours after the first Enbrel injection I was in a partial remission - at which point my nurse became pretty much my favourite person in the world! For a year before this, I hadn't been able to leave the house without Molly Stick, but the day after the injection I walked down the stairs unaided. Of course, my dad wouldn't actually let me go anywhere without Molly. I was all for going for a run that first morning, but he wasn't so keen on having to rescue me, if I collapsed!
It became clear that I wasn't in a full remission - I still had symptoms, though for the most part they were pretty minor. Every so often I'd wake with full on swelling and pain, but mostly they were at a manageble level.
Now... this post is getting a bit long, so I will pick up the story from here in my next post... (in the next installment I go to pain clinic and almost get murdered by an ipod!)
I'll just skip to my point. Part of the reason I've left it so long between posts is the number of shoulds piling up in my brain - "I should have posted already" "I should write my post tonight, despite the fact that I'm too tired" "I should have something more interesting to say" "I should be able to write this more coherantly" "I should do the housework/washing/cooking before I post" "I should write something BRILLIANT to make up for the long absence."
Well, I'm done with shoulds. I refuse to be paralysed by shoulds.
So there it is - I'm a Bridget Jones look-a-like, slack blogger... and I'm proud of it.
Thanks for reading
Little Miss Autoimmune :-)
*Not sure if everyone will understand the word "remission" in this context. I'll include a definition in my next post.
But I digress...
The reason I feel silly writing a blog post at this stage, is that it has been *gulp* five months since I posted anything. I gave up even pretending I was going to post soon, because I could tell it just wasn't going to happen.
When I last wrote, I was incredibly sick. Both the joint symptoms and systemic symptoms of my arthritis were out of control... things got pretty hairy there for a while. I was having trouble... well doing anything really. Even getting up to go to the bathroom was a huge struggle, especially as I was having frequent falls. Simple tasks had become incredibly difficult and solid food had become a distant memory as the pain and stiffness in my jaw made chewing near impossible (eating icecream and soup for months on end, is not as fun as it might seem!)
Added to this, I'm prone to periods of insomnia and the constant pain was making falling/staying asleep hard to say the least. Crazy Helen was starting to emerge...
But, it's not all bad news. In fact, what happened next was about the best news I could have hoped for. I'm currently in a partial theraputic remission*
A stint on pain killers helped with the pain levels and sleep problems (thus saving my sanity!) but they couldn't do much to help the systemic symptoms. Among other symptoms, I had to have several weeks off work as the inflammation in my voice made shifts on the phone impossible (no-one ringing a helpline in crisis really wants to talk to creepy-croaky voice lady) and I had near constant double vision.
Fortuately my nurse managed to get me switched from Humira injections to Enbrel. Up until this point, I'd been told there were no more medical options for me. My doctor (and my nurse too, really) believed my condition was drug-resistant. Therefore switching me was going to have no effect. My nurse insisted on at least trying (she told me later that after arguing with my doctor he ended up saying "fine, do what you want, but it's not going to work.")
12 hours after the first Enbrel injection I was in a partial remission - at which point my nurse became pretty much my favourite person in the world! For a year before this, I hadn't been able to leave the house without Molly Stick, but the day after the injection I walked down the stairs unaided. Of course, my dad wouldn't actually let me go anywhere without Molly. I was all for going for a run that first morning, but he wasn't so keen on having to rescue me, if I collapsed!
It became clear that I wasn't in a full remission - I still had symptoms, though for the most part they were pretty minor. Every so often I'd wake with full on swelling and pain, but mostly they were at a manageble level.
Now... this post is getting a bit long, so I will pick up the story from here in my next post... (in the next installment I go to pain clinic and almost get murdered by an ipod!)
I'll just skip to my point. Part of the reason I've left it so long between posts is the number of shoulds piling up in my brain - "I should have posted already" "I should write my post tonight, despite the fact that I'm too tired" "I should have something more interesting to say" "I should be able to write this more coherantly" "I should do the housework/washing/cooking before I post" "I should write something BRILLIANT to make up for the long absence."
Well, I'm done with shoulds. I refuse to be paralysed by shoulds.
So there it is - I'm a Bridget Jones look-a-like, slack blogger... and I'm proud of it.
Thanks for reading
Little Miss Autoimmune :-)
*Not sure if everyone will understand the word "remission" in this context. I'll include a definition in my next post.
Monday, December 6, 2010
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 :-)
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 :-)
Saturday, December 4, 2010
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.
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 :-)
Happy scavenging!
Little Miss Autoimmune :-)
Tuesday, November 9, 2010
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
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
Tuesday, November 2, 2010
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
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
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