Oz Working Dogs - Assistance & Working Dog Equipment

For assistance/service dog equipment, as well as guide, therapy, detection, search & rescue, police and dogs in training equipment check out my website http://www.ozworkingdogs.com.au - I make and sell vests, capes, belly bands, harnesses, handles and more... and will post to the world!

Sunday, August 14, 2011

Lupus (SLE), The Spoon Theory and Assistance Dogs

Pre pickup 2 weeks 3 days old

If you're looking for information on whether you can have a service/assistance dog with lupus please read my more recent post here.

So, until this post I haven't actually said what condition I have. Suddenly today I thought it was about time - and past it. I don't know why I have been cagey about mentioning it. I guess I still have issues accepting what has happened to me over the last several years. However, I thought it was kind of silly having a blog all about getting an assistance dog (hopefully, cross your fingers for me) and being unwell and all, and just keeping the manner of unwellness to myself. Especially when I can use this blog to educate, rather than just hide away. Many people don't know what Lupus is, and even when they do, they don't know how amazingly under researched it is, and that only now are we in the first trials of the first new Lupus medication since the 1950s.

So yes, I have lupus, otherwise known a Systemic lupus erythematosus. Or at least, they are like 99% sure. Because it can be a very difficult condition to diagnose - some people can wait 10 years for a confirmation of diagnosis. My diagnosis has firmed up in the last year or so. Systemic lupus is a systemic (in other words, it can effect the entire body) autoimmune condition, where your own immune system can attack anything it jolly well pleases, pretty much. In me it is characterised by joint pain, muscle pain, fever, rash, at times extreme fatigue, sweats and nausea. Well, those are the main symptoms, I could go on all day really :P . In addition I have a couple of bad side effects from medication I take - immune suppression (I get sick easily, eg I got very very sick with swine flu) and dysphasia (I often cannot find the words I want and feel like I have dementia, sometimes misspell obvious words).

An assistance/service dog forum I am a member of linked "The Spoon Theory" (pdf) by Christine Miserandino, someone who has lupus whose article has had a great deal of impact upon many people. I highly recommend you read it, not only is it a great analogy for anyone with a disability, but it gives you a very very accurate idea of what it is like to live a day in my life. A lot of people in disability circles have read the spoon theory these days, and you hear people refer to 'saving my spoons' etc. It hit me quite hard in that it was someone with lupus who had written it, but it also helped me to know that there was someone who day-to-day was going through *exactly* the same balancing act I was. So thank you Christine, wherever you are out there in the world. I am pretty poor with saving and balancing spoons still, I give into people - and myself - too easily, but more importantly, I think having an assistance dog around would give me an extra several spoons per day. As someone with a very limited spoon supply, that is something I very very much need!! So now I have mystified you completely with my talk of spoons - GO BACK AND READ IT! :D

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When I first started feeling sick, my medical team fumbled around completely willy nilly for a diagnosis, and I spent a fair few months in hospital, in growing pain. I had two exploratory surgeries, and a huge lot of medication. It wasn't until I broke out in a strange rash that my docs at the time thought of doing some autoimmune testing and found my ANA (Antinuclear Antibody) was sky high and suggestive of Lupus, the highest many of my docs had seen. My doc at the time instantly though of Lupus, and referred me to a top specialist in the area. Finally things were on the right track, and I instantly started treatment for Lupus, but it was still a year or so until it was a fairly certain diagnosis. After a terrible sunburn (sitting in the shade, a big hat on, with suncream), 2nd degree burns, massive blisters all over my face and neck the diagnosis was pretty much locked in. Recently, as I have mentioned in some recent posts, I have had rashes on my face and chest, including some fairly 'butterfly'-ish facial rashes. This is why Lupus is known as Lupus - the distinctive face rash is meant to look like the facial mask of a wolf  (the darkness across their nasal bone and where it spreads across their cheeks) and Latin for wolf is Lupinus.... so, Lupus. Dogs being the decedents of wolves, obviously I am just meant to have an assistance dog!

The treatment at hospital I have been having recently has been what they call 'pulse' steroid treatment. My problem, and the reason my diagnosis has been 99% not 100% is that I have not responded positively to steroids in the past, and usually they are the first medication of choice for treating autoimmune conditions like Lupus. The very first time I was given them, they seemed to help, and then not since then. So my specialist decided to pull out the big guns, since my condition has continued to pretty much stay the same, and in some respects even disimprove. So I was given some huge doses of steroids via IV over three weeks to really test whether they would do anything. Firstly, the rash is nearly totally gone, which is great. There is a little scarring, but I hope that goes too. Secondly, I think - and I don't want to get too mad keen and excited over this - but I think there is some improvement of joint pain. I can touch my hips without screeching (lol), and while I am still having bad and good days, overall I seem to walk with slightly less pain. It didn't make as much difference as I was hoping for, but even no rash is a very nice change. So I'm guessing my specialist will make it 100% when I see him in a few weeks time now, which will be good, I don't like any amount of uncertainty in this.

On a day to day basis in public I use Canadian Crutches to help take some weight off my joints, and to help me pull myself along when exhausted, sometimes I need them around the house, but often I 'furniture walk' as they call it. I use a reacher around the house so I don't have to bend if I can help it, because having to bend much spells disaster for the next day. I have a walker for longer trips out, if I know I may need a place to sit down for periods of time before moving on (eg. festivals etc, although festivals are risky for my compromised immune system). I also have a wheelchair for going out shopping etc. On good days I can use my crutches for shopping, on bad days, or certainly after a flare, I'd need the chair. So that's my assistive technology. I also have a folding cane, but it's not enough for me these days. I would really really like a scooter for when (if! don't count your puppies before they hatch, girl!) I have the dog, so I can give him lots of walkies and also increase my own independence. But we'll see, I've been looking at second hand ones online, and perhaps in the future we could do it.

In addition to Lupus, I also suffer from regular migraines, and have chronic daily headaches. This has been an ongoing condition since 2001, and I have mostly learnt to manage it. However it does make the management of Lupus more difficult, especially when a bad migraine intersects with a bad lupie day. It is those days that make me consider a trip to Emergency - but I have vowed to myself that I will not go back to hospital unless I am practically dying. I definitely need a calm dog for days like that, when the world is just TOO MUCH!

So, finally I have been open on here, and feel better for it. Perhaps it makes it more clear how a mobility  assistance dog can help me now. If you have any questions about lupus, or anything I've said feel free to comment.

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