Photo Challenge for CRPS Awareness, Day 10

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 10 – A picture of your something you’re afraid of

Well, initially Magic Dude took a piccy of a spider for me! *shudder* But this is a photo’ challenge for CRPS awareness, so I feel I would be missing the opportunity to share some insight on living with CRPS if I went down the spider route. (Plus, I’d keep seeing the spider picture as I flick through blog stuff and that’s not something I relish!)

As a patient with multiple chronic conditions with a large dash of progressiveness, fear is something I am used to. I don’t want to be afraid of what the future may hold, or other things that may ‘go wrong’ with us. Let’s face it – that would be a waste of my time as who knows what the future holds? And even if we could say for sure, dwelling on it means life passes us by and I’d rather live my life thank-you! 😀

So… let’s look at the immediate issue – what if an unplanned for event means that I end up in hospital? Most of us humans do at some point, after all!

If I do, the information the relevant doctors and nurses will require is quite simply only going to come from me. The likelihood of them having a clue about CRPS in it’s basic sense, let alone in it’s complex multiple system reality, is about as likely as every other doctor and nurse I’ve ever met….. either none at all or a wonky out-of-date version.

So…. what can I do about it? Carry information?

Sure, but carrying research papers with ‘read in an emergency’ written at the top of them is not really going to help matters if things have to be dealt with in a hurry. Medics have standard ways of dealing with specific situations and wherever I don’t fit into that I need to be able to highlight quickly and simply so that they can quickly and simply work around the issues.

I have a wallet card. Originally I printed off the RSDSA card (see my Useful Links page) but my condition developments mean that a pain-only information card is just not appropriate for me any more. So I made my own, printed it off and covered it in sticky-backed plastic to keep it legible in my wallet.

Every now and again I have to change or add bits. New health information or medications need noting. Loss of family ties (which is horrifically common for patients with chronic, complex and little understood conditions such as CRPS) means having to update the emergency contact if that changes, too.

There was some discussion in one of the CRPS groups the other day, about being prepared when we go out. A wallet card was something that a few of us mentioned and those that don’t currently have one were asking what we have noted down on our cards.

So, here’s my new wallet card I’ve been creating today. It helps to reduce the fear of inadvertent mistreatment by medical staff and thus reassure me that if they have the facts upfront they may be able to at least help avoid creating any new problems for me!

Elle and the Auto Gnome, Wallet card

Which, in close-up, looks like this….

Front of wallet card

Front of wallet card

Back of wallet card

Back of wallet card

If there’s anything you think might need adding to my wallet card, or aspects that might be handy to add to a general wallet card, or indeed any comments on this that could help others, then please do comment below as I am sure that your input will help fellow patients piece together what we each need to include on our own wallet cards if we’re going to create one, x

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Additional note added 11th June 2013:

My reply to a question about the non-adrenaline anaesthetic: Yep it’s CRPS related.. because our autonomic nervous systems are disrupted our ‘flight or flight’ mechanism kicks in really quickly over very little,.. we want to do everything we can to keep our nervous systems calm so that we can get through surgery / dental treatment / anything invasive with as little raised response as possible. Adrenaline is part of the fight or flight response, so we really don’t want even more of it in our body than is already being released under those circumstances. So using non-adrenaline (non-epinephrine) anaesthetic means that we reduce the likelihood of the body over-reacting which means less chance of spread or new issues in the area and less chance of a new faulty autonomic issue precipitated from the over-reaction, xxx

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10 thoughts on “Photo Challenge for CRPS Awareness, Day 10

  1. Hello Ellen, great job putting your 30 day challenge in a blog! I’ve been saving mine to do the same. My localized RSD hasn’t even been “offically” dx’d. The Autonomic Dysfunction has. Thank goodness I followed my hospital stay with a cardiologist. GP saw that all my heart workups were fine, as in resolved after caridac event. He was basically useless to me at this point and actually chided me! I knew better, between the event damage to heart muscle, my hypertension and surges I was scared! Yup all Autonomic dysfunction was the cause. Now to prove it. Waiting to get a new PMR. Luckily, she is a board certified fellow and schooled in neurology, Pain management & Anesthisology.

    I have a binder together with my heart event in Dec, Cardiology report, psyche clearance hoping to be understood next time I need to call 911! This wallet card is Awesome!! Good luck to you!

    • Wow, you’re super organised hon, and really well informed too 🙂 It’s the only way to be with conditions like this, eh?! Like you with your binder I also need to create a bit of a condensed timeline for doctors’ use at a pinch, hopefully it’ll stall those silly questions like “and whooooo diagnosed you???”! Heh!
      I’m glad the the cardiac event resolved and, yes, cardio’s tend to potter off and leave us to our own devices once they find out it’s autonomic rather than heart stuff! Hope you get the back-up you need to back-up the autonomic involvement, with neurology involvement that’s a really good sign, x

      Thanks for commenting Marge, if you’d like to post the link to your health blog below for others to pop over and have a look at then feel free, x

  2. What a good idea!! Thanks for sharing. I’ll definitely be making one of these. I have just been advised to make a similar thing for my flare up plan so that I can quickly show it to people anywhere and everywhere if needed!

    • Oh it’s so handy. Especially as when I’m in flare it is even harder for me to string words together at times! 😉
      The RSDSA card that I mentioned in the post is also a handy one for general info’ which can be helpful for waving at friends when we just can’t explain it when we’re hurting loads, x

  3. This is a great idea. The HMSA give all their members cards like this and it never crossed my mind ’til I joined. Glad it did now though because there’s a high probability that local anaesthetics (like Novocaine) won’t work on me, and all painkillers last less time than they should. I’ve always been terrified of needing surgery and waking up half-way through! Such a simple solution to a complex problem.
    The only thing I’d think to be missing is maybe a contact number for your GP or specialist?
    The medication bit is an incredibly responsible and sensible thing to do. I wish more patients were as good as you, then maybe people wouldn’t bad-mouth the pharma’ industry so much.

    • Ooh, I didn’t know the HMSA gave out cards. Mind you, I didn’t look into memberships either – I found them online, ‘favourited’ the website and ‘liked’ them on Fbk! I’ve seen that they do a lot of work raising awareness. They seem to be far more active than the CRPS organisation in the UK, so I already think highly of them. This info just raises my view of them all the more. Great stuff 🙂
      Good point re the contact number for GP or specialist. I have no specialist who is more than a stop along the way, none of them have up-to-date details on all aspects of my health and I quickly get discharged and referred along to the next specialist. So my GP would be the best bet for me, but as she’s my new GP I need to make sure she understands the condition a bit more first, otherwise she’s not going to be less useful than Magic Dude could be.
      Yeah, seeing as med’s can cause side effects and misbehave if coupled with other meds then the hospital peeps need to know what they’re dealing with. I hope the meds list helps me out should I ever need help.
      x

      • The HMSA are great, and are really hot on advocacy and information. It’s a shame that the CRPS people aren’t so good, but that might be because CRPS is a relatively new “term”?
        There’s also the FMA UK (fibro’ charity) who work with chronic pain, and Rare Disease UK, who deal with most rare diseases.
        Sadly, as magic as Magic Dude may be, sometimes emergency doctors and so on don’t believe medical knowledge of family, so having a GP backing you up is awesome. I might upload a snapshot of my HMSA card (with my address blurred to avoid crazy stalkers!)
        Loving your photo challenge by the way!

  4. Consider changing “arrythmia” to “dysrythmia”, unless your heart stops at times… the former refers to cessation of rythm, the latter to disruption of it. In the US we’re quite strict about the difference, especially as it is possible for a stopped heart to restart.

    It’s good to clarify to emergency staff whether you expect them to make every other effort to save your life in extremis. It’s worth putting that on its own line.

    It’s also worth making one more elaboration. “No adrenaline, including in anaesthetic…” and here, either add, “except in cardiac arrest” or, if you don’t want to be coded, “and cardiac arrest.”

    There are people who are seriously allergic to adrenaline and could be permanently killed by using it in an effort to restart the heart.

    As you can tell from all my mulling, I’m about to redesign the wallet card I’ve never bothered to carry cuz it was too chaotic. This is wonderfully clear.

    • Ooooh, thanks hon, that’s fabulous feedback thank-you! 😀

      I’ve only heard doc’s refer to it as arrythmia so without your clarification I wouldn’t have realised they might have got it wrong or been generalising. I will indeed change it to dysrythmia because rather than stopping my heart just goes flippity mental! No rhythm, just a kinda all directions attempted at once, blubber kinda affair! Thanks, xx

      Ooh, I also need to change it in the symptoms list for my doc’ too, thanks.

      Ah-ha, yes, definitely gonna amend the adrenaline stuff then, and I would also like to continue living if at all possible 😉

      Groovy, thank-you super chick. I’ll go and amend this and then re-post it sometime so that people can see the improved version 😀

  5. PS adrenaline is also used to treat allergic reactions, to keep the lungs open. It’s a first line med. I figure, if I’m unconscious from the event, whether it’s cardiac or pulmonary, they can use adrenaline. Otherwise, my body isn’t desperate enough for more.

What do you think of this post? Elle and the Auto Gnome welcome feedback, x

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