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 :-)
Monday, December 6, 2010
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 :-)
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