Interpreting new medical information

How do we find reliable information and not freak out when given a new diagnosis?For those of us with multi-systemic conditions new diagnoses are pretty much par for the course, but our laid back attitude to new conditions is won from experience.

Weirder still is how we also have to deal with no clear diagnosis as this often means the continuation of confusion in the medical practitioners working with us.

This year I’ve experienced both!

I’ve been to see the UK’s top autonomic dude and been told I have POTSy stuff going on but not enough to be diagnosed with POTS. This is confirmation of autonomic dysfunction and how in my body it is also wreaking extra havoc with near-fainting (near syncope). Not that less specialist practitioners really know what to do with ‘autonomic dysfunction’ or what array of ‘interestingness’ that can result in.

I’ve also been to see one of the team at the UK’s top department for hypermobility and been told that I have partial hypermobility. After all my years working hard on my legs (for example I no longer have to work my kneecaps until they loudly *bang* back into place)! I am still very hypermobile in my core, though. This explains why even my breastbone has been subluxing in recent months. (Subluxing is a patient shorthand for sub-luxation which is when joints pop out and back into place, it’s a partial dislocation rather than full-on dislocation/luxation). So I received some instructions to get referred to physio’ rather than any diagnosis which would be clear to other medical practitioners.

Frustratingly the hypermobility expert noted that she didn’t see any signs of CRPS in my skin at all. I wrote to her asking for this to be amended in her report as although a CRPS expert would know that whether any ‘signs’ of CRPS are present or not at any given moment in time has no bearing on whether that patient has CRPS or not, she sadly did not deign to a) respond or b) amend her report. So her report effectively includes what looks like a query over my CRPS diagnosis which only experts would realise was unfounded and any other medical practitioner would actually take that questioning of the diagnosis on board. *sigh*

The latest info’ arrived long after the hypermobility appointment as a result of an x-ray which was requested by the expert to ascertain whether I had shallow hips. I’m going to use the resulting letter to show how I choose to filter search information online.

First rule of searching online: searching individual terms is handy for a clearer understanding. I don’t want to find lots of vaguely or potentially related information, I would have no idea whether what I was reading would be related to my personal situation or not, so first of all I only want to find the exact meaning for my body.

Second rule: use a reliable source with a clear explanation. Once again.. I want a direct translation, not a load of vaguely related gumph that might not even relate to my own personal situation. So no wikipedia, no tangents into something that includes the terms I’m searching, simply a good medical dictionary or medically grounded information website.

So, here’s the info’ from the consultant’s letter..

Letter, hip x-ray, part 3

 

Essentially I want to translate this key bit of a sentence:

“…minor dysplastic changes with minor degenerative changes in her hips.”

First of all – note that “minor” is used in both cases. Long-term chronically ill folk usually don’t panic anyway, I mean, what’s the point right? I wrote a post a while ago about the time I visited a cardio’ doc’ and he said he could think of nothing that would make my permanent near-fainting anywhere near bearable or functional except for a pacemaker. Even in a situation like that it’s a case of allowing the emotions to pass and then getting back to life. We don’t do our thinking when we’re emotional because we recognise (from that bumpy old road of experience) that our thinking is pretty poor under those circumstances. It’s just the way the human body works so don’t worry about that happening, it’s just the way it is. And anyone with autonomic issues knows that when the ‘fight or flight’ kicks in then we’re not to even bother thinking at all, coz that mechanism means we don’t have full access to our higher functions anyway. So, even if you receive a shock diagnosis…. allow yourself time to calm your nervous system down. Stop, sit, have a cuppa and don’t try to figure out what it might ‘mean’ because our brain is not equipped to do that until we get calm again.

So yes, back to looking at how to decipher medical info’, which we only do when we’re feeling calm…

“Minor” sounds positive, “degenerative” can sound scary. It would be quite natural to skip past the “minor” and focus on the “degenerative” but it’s unhelpful and inaccurate to do so. Once we allow our emotional response to choose the focal point then our imaginations start getting involved. Our imaginations are amazing things, that’s why some of the scariest horror films are the ones that don’t show you what is actually happening to a character at the time – because it’s way scarier to let our our imaginations do what they do. So leave the imagination out of it. We simply want facts. Just a translation. Keep focused on that because it is key to dealing with medical information in a manner which is most helpful to our health (both mental/emotional and long-term physical).

The initial question is: “what does dysplastic mean?”

We can type “dysplastic” into our search engine, but then we also have to remember that we need a reliable source with a straight-forward translation in medical terms so adding the words “medical dictionary” or “medical terminology” or something like that might help us. But even then the search will still find case studies, specific types of dysplasia, maybe even hip dysplasia which sounds so appropriate that it would be tempting to follow one of those links, but I just want a meaning for “dysplastic”. That’s all. I don’t want to read stuff which may be medically relevant to the subject but not actually relevant to my health or my body.
I can read around the subject after I have a basic understanding.

It is important to notice here that the information that we choose not to explore is at least as important as the information that we do choose to read. Restricting our initial reading reduces that chance of reading things which don’t actually directly relate to us and which might make us worry unecessarily. Choosing to look after our mental health and emotions at this stage is as important as finding out how to look after the physical health issue we are looking into. We deserve to be able to work through new information in a manner which is informative without adding extra layers of potential distress.

So I ignored pretty much everything that the search brought up because it wasn’t specific enough. What I did take on board was that it is a very vague term. “Dysplasia” bascially means that something is not entirely ‘normal’. It simply means that there is a standardised ‘norm’ for things and we do not fit that norm exactly. So in that letter I’ve basically been told that there are changes which have resulted in my hips no longer being described as ‘normal’. That is all I need to know at this stage – it is vague, and my hips are just different. But vague is better than wrong, so my careful filtering out of lots of info’ has done it’s job…

Many of the links included references to moles and cancer, imagine what could have been taken away from a search on “dysplastic” if I hadn’t been so determined to simply find a translation. Anyone in this situation could have started worrying that the changes are really scary, it would have been all too easy to make assumptions about what that letter meant, about what’s happening inside the body, what it might mean to future health etc. So yep, translation only – avoid all round-the-subject information until you are sure what exactly has been reported about your own personal body.

So, “minor dysplastic changes” meant that my hips had developed something different from the norm. The next bit says there’s some minor degenerative changes, too. But that’s it. There is no other info’ there to make it any clearer. And when you live with a complex condition where many possibilities exist then there’s no point worrying about anything unecessarily. Whatever is, just is. So all I want is some more info’ to clarify what I’m dealing with because key to working with this is to know what I’m working with, of course!

So I asked my GP for more information. She’s used to me asking for more info’ and she knows that I ask simply because I want to understand how to do the best I can for my long-term health. I live in the now, but that doesn’t mean that I don’t look after my body for my future.

The extra info’ the GP gave me is from the radiologist and is less of a potential emotional minefield as it simply requires translations of terms for parts of the body…

Letter, hip x-ray, part 2

The “femoral heads” are simply the top of the thigh bone (femur), and “acetabula” is the rounded bit of the hip joint that is part of the pelvis (plural of acetabulum so it refers to both hips in this case). Simple searches can uncover this information as long as you continue to refuse to get led astray. ‘Just the facts, ma’am, just the facts!’

“There is minor uncovering of the femoral heads but the
acetabula appear well formed”

So, interestingly my hip joint is not too small, which is what usually happens with dysplastic hips (see how easy it would have been to read information which is relevant to the words used, and even to the condition in general, but incorrect for my own body). So as the tops of the thigh bones are not fully covered by the joint sockets then I guess they must be too big, or is that another assumption?! See how easy it is! As my fabulous fellow blogger Isy Aweigh pointed out it could alternatively be as a result of my ligaments being too stretchy to keep things where they should be (totally viable in my partially hypermobile body), or it could be that I have a strangely chunky amount of cartilage in the mix, or even a mix of all three of these things. I don’t know because the information doesn’t specify. Whatever it is, whether it is a result of the changes over time, or whether the changes are something else and I’ve always had abnormal femurs/ligaments/cartilage is not something which is explained here. So that is unknown because you can’t assume anything when it comes to your health! Though the hypermobility expert has interpreted them as “dysplastic changes” in her letter so maybe she was privvy to more information than the GP and I, or maybe she made an assumption, who knows?!

The last bit of the radiologist report reads:

“Minor degenerative change noted with some sclerosis. Joint space is preserved.”

It doesn’t answer the questions I would have as a non-medically trained patient… ‘degenerative change to which bit?’ Don’t be afraid to ask your GP to explain things to you. And don’t be afraid to ask them to get more information from the expert in question if the issues are not fully explained.

In this case my GP translates the radiologist’s report as the tops of my thigh bones having the degenerative issues and my joint sockets as being a-ok. My wonderful nurse friend has also said that if it doesn’t specify where the degeneration is then it means that it’s in the joint space (which includes the cartilage and the ends of the bits of the bones that help to form the joint), but as patients there’s not really any way we’d have of knowing so asking medical practitioners for more information can be very helpful.

Whereas a quick search on “sclerosis” wasn’t actually very helpful. *sigh* The various links advise that it is a thickening or hardening of tissue and then go off on various different specifics which may not relate to my personal situation. Once again the handy Nurse Isy crops up to advise that sclerosis is basically scarring – tissue that has been damaged and repaired, but the repairing tissue is different to the original tissue, it’s thicker and denser – hence the thickening and hardening effect.

Knowing that the joint space is still good is great news as it means that the bones are not grinding on each other, which would involve further issues to be looked at if they were.

As it turns out, I’ve been taking high strength glucosamine with chondroitin for, oooh, about 12ish years now I guess, maybe more. It’s a good combi’ for cartilage repair (not regrowth) and even repair to some small fissures which can occur in the ends of the bones at the joints; or at least that’s what the research said years ago! It’s still said to sometimes help with joint pain anyway. So who knows… maybe that’s part of the reason the issues are still noted as “minor”. Either way, it’s been no bad thing for my body to keep taking the combo’, which is rather nice to know. 🙂

So, if this was your medical info’ would you be champing at the bit to find out more yet? Okay, okay!

Now that we’ve checked out the terms one by one and got a clearer understanding of the basic issues as they relate to the specific patient’s body, let’s see what wider reading on the degenerative issue can tell us…

A search on “degenerative hip joint” basically brings up Degenerative Joint Disease and advises that it is also known as Osteoarthritis. Oh. Right. That seems pretty clear then! Except it’s not – it turns out that they are not the same thing in diagnostic terms at all, and each have very specific criteria which at this early stage I would not meet. So I had figured that I had early onset osteoarthritis, and yet it was not the case at all. I am predisposed towards it yes, I have early signs of hip degeneration yes, but at this moment in time I am a patient experiencing issues with my hips, but I am not a patient with a diagnosable hip condition. Again, another example of how tricky it is to find truly accurate and reliable information online, and another whopping great example of how important it is not to over-interpret what we find. Keep it specific to you and your body, don’t expand the information to broader health issues because they may have nothing to do with your current situation.

I would always advise the same filtering system to be in place when you search anything on the internet, especially anything health related because the impact of false or even just tangential info’ can be so problematic for our understanding and current health as well as how we are to assess any changes to our lifestyle for long-term health.

Rule of thumb: look for a medically sound website which is not pushing one aspect or another. We want to know what works, or not. Not what sells. Remember… ‘Just the facts, ma’am!’, and just relating to your body.

I found a link when I originally searched which noted all sorts of different treatments from cortisol injections to surgery, and I loved the information in that link because it was also noted that many of the treatments enabled a short-term improvement at the expense of worse long-term issues. I immediately knew that I’d not be opting for any of those and that my existing approach of exercise (including strengthening), good nutrition, and medical/fitness support on hand if I need it would be my way of working with this development. I have just searched again and haven’t found that link. That just goes to show why our self-imposed filter system is so important in these kinds of searches.

As far as me having hip problems goes, it’s no biggie. Many people get joint issues developing from middle-age onwards regardless of any pre-existing health issues. I’m just starting somewhat earlier that’s all. And it’s not like I don’t know how to manage pain, or how important both physio-exercise and recuperation-rest is. So this is easy to take in my metaphorical stride (even though I’ve been stuck on the sofa for several hours recovering and resting after my morning physio’ earlier today, I can still metaphorically stride, right? 😉 )!

But my letter that I’m using as an example could easily have been perceived as scarier. In fact this example could have been scarier simply by handling the learning process differently and failing to filter out the excess of information which may not even be relevant.

So if you’re going to search medical info’ (and I recognise any ‘expert patient’ is going to do that at some point because we’re the centre of our health web and need to know what’s what).. be aware of the importance of how to search medical information, and of the importance of keeping the info’ specific to your body. Most especially be aware of the huge importance of how to filter out the less reliable information and that which is less specific to your body. And never forget to allow yourself time for the emotions first – medical searches are not helpful when we’re feeling emotional in any way. Allow yourself time first, then if you’re going to search for something only do so when you are feeling calm because that means that our brain is in a better state to filter and work through the information accordingly.

And finally, there is a footnote in the letter from the expert, did you notice it?

Letter, hip x-ray, part 3

“Should she continue to have significant problems despite that a referral
to a local orthopaedic surgeon is advisable.”

Would it have worried you?

Remember: this is a footnote for my Doctor. It is not a note for me to worry about. If I go to her at some point in the future to report worsening hip problems it simply gives her a pre-set starting point instead of a new round of referrals to ascertain where it is best to send me first. That’s all. And in addition it also confirms that I’m doing the right things, which is always great to know.

Hoping this helps a little bit,

From your friendly blogger who, medically speaking, might actually be… quite hip?! 😉
(I know, *groan* right? Sorry).

(Not sorry, really. Hehe).

x

One of those weirdly surreal days

How do you react to being told that one of the UK’s top Tai Chi teams want you to join them *and* to compete as part of the team at the European Tai Chi Championships in Latvia in only a couple of months time?

I mean really? Whaaa?

My first emotion was one of excitement, but the shock soon set in! By the time I was halfway home my facial muscles had gone all slack, my eyes were wide in shocked disbelief and my mouth was gaping, I must have been a weird sight!

So, in my case the internal reaction seems to be.. ‘Whaa? Wooow! Really? Woah! I haven’t got my passport sorted yet!’

Quickly followed by… ‘I’ll need to take my wheelchair with me. I need the rest of the team to get their head round the reality of a Tai Chi competitor also needing a wheelchair some of the time even though they look ‘normal’ when they’re not using it. I hope they can get me a seat on the plane with plenty of leg-space. I wonder if the aeroplane people will lose the arm rests, maybe I should bungee them onto the wheelchair before they load it….’ etc etc. During which my fight or flight kicked in, because it does that over even the slightest raise in heart-rate (My fight-or-flight: “Your heart-rate has fractionally increased! Oh no, we’re all going to diiiieeeee”), and before I even reached home my autonomic flibbles meant that I also became rather nauseous. So I figured it was best to simply concentrate on careful breathing to calm my silly inner-wiring.

But the day was even more surreal than that, so instead of coming home and variously grinning and pondering my way through the afternoon, I instead had to come home and type up a potted medical history for the cardiologist who I was seeing that very afternoon.

Off to the hospital. Quick ECG as usual. Which was all fine and dandy, as usual.

The reason I’d been referred back to the cardio’s again was because my GP gave me a 24 hour ECG (called a ‘holter’ in some countries) and instead of my wiring saving the heart flippity-flappities for when I’m not all wired up and Borg-like it actually misbehaved at a time when it would be registered. But… instead of my heart going flippity-flappity it ‘paused’. For 46 seconds!

*sigh* Always something new, eh?! Ah well.

Anyway, the outcome from the appointment was that we really don’t know what my wiring is diddly-doing so I’m going to get called in to get set up with a 7-day ambulatory ECG sometime. Fortunately it should be before the European Tai Chi Championships. Yes, I checked! 😉

Just because the day is so darn weird anyway, why not do something out of the ordinary to be in-keeping with the theme?…

On my way out of the hospital I wandered past a clothes shop with ‘SALE’ in large, friendly letters ( 😉 ) and in the window was a dress that caught my eye. So I went in, tried it on, and blummin’ bought myself one. Yes, you read that right, I actually bought myself something that wasn’t ‘necessary’! It wasn’t supplements, or med’s, or compression stockings, it wasn’t even a Tai Chi seminar for extra physio’, it was a dress that I bought for myself simply because it’s pretty. Well it’s pretty *and* purple *and* paisley, so how could I resist?
dress from hospital
Though perhaps it says a lot about my life that I bought it inside a hospital! Hehe
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So, I’d been out of the house twice already that day – once to Tai Chi class (and the shocking news) and once to the hospital. But Tuesdays are called Totally Tubular Tuesdays in this house because I have two physio’ classes that day, yikes! I wasn’t sure if I’d make it to adaptive Kung Fu as well, but Wednesdays are always my rest and recovery day after my tough Tuesdays so yeah, I went anyway because I’m determined/stoopid (delete as appropriate)!
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It’s now been over a week since my teacher scored points for managing to render me speechless (not many people manage that! 😉 ). And the update is that the Championships have now been moved to the UK, so at least I don’t have a plane flight to deal with now, pheweee! That could have blown my pain right off the scale. It’s hard enough competing in the UK with my health conditions delivering their characteristic collection of aftermath problems, but at least I know what repercussions to expect from competing here.
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So I’m in ‘training’. Which actually means that when I have a Tai Chi class I practice with aims instead of ‘just’ practicing! Which I obviously need as I’ve been told that I had somehow turned one of the Chen style parts of the 42 form it into a “sexy salsa version”, oops! So yeah, plenty of work to be done whenever I can spare some physio’ time to practice! And what with the need to eat, wash etc there isn’t exactly oodles of physio’ time available to purloin, but you know I’ll do what I can, as always.
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I’ve said it before and I’ll say it again…. never, ever. ever cap your potential. Live in the moment, enjoy the shiny bits, and don’t ever assume that ill health means that we will live in a perpetual metaphorical downpour forever more. There are always moments to make us smile, however small. I do feel lucky in some ways. I certainly feel lucky to have ended up with such an awesome teacher. But I know that the grit and determination of my paced exercise over the years is down to me, and without it I would not have got to the same level of beneficial effects from that pacing today. I can safely say though that physio-ing at something I actually enjoy takes far less determination to keep at it! 😉
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Much love from the spaced-out blogger recovering from shock and cardiology! 😉
x
UPDATE:
The European Championships will now be held in the UK instead of Latvia. The change in venue has also meant a change in date as it will now be held in April 2015. Which means more time to get over the shock and to get some training in during my physio’s!
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Raising awareness through the awards programme, x

Getting nominated for a blogging award is awesome! It’s not why any of us become health activists, mind you. We’re driven simply to help people with certain health conditions – to know that we’ve helped in some way is the all the reward we were hoping for and all the reward we need. But apart from making your fave health activists go all warm and melty and start claiming that “no, no, of course I’m not crying, I’ve just been cutting onions, that’s all. Honest!”, it also means that other people out there, maybe other patients who’ve been looking for us, get to hear about links to reliable websites, blogs and research papers. In the case of CRPS it also means being able to let other people out there know how to help try to avoid it developing in the first place. Wow!

I wrote recently about nominating for your fave Health Activists online as it’s the season of WEGO Health Activist Awards again. Share the love this winter. Trust me, these nominations really warm the heart because none of us do this for any return, all health activists do what they do because we want to help others. The ultimate return is that we manage to deliver writing / links / research information / chuckles that help. Helping is truly it’s own reward, anything else is extra.

So when I got nominated for a fourth award I pretty much keeled over in happy surprise!

Here’s the awards that you wonderful, lovely, kind, sparkly people have nominated me for…

hero_titled_transparent_2013-10-22blog_titled_transparent_2013-10-22hilarious_titled_transparent_2013-10-22

Best in Show, Fbk (2)

Wowee!

But the awards are also a wonderful way to raise awareness. CRPS, Dysautonomia and Hypermobility are more common than generally thought and there are fellow patients out there still looking for reliable information.

I have found that other bloggers I’ve met along my journey are also voting for other activists just as I have been. I love that there is no unhealthy competition, we all share the same aim – to raise awareness and help others. To help as many people as we can.

This year the first three bloggers for each award with the most endorsements automatically become finalists. Nominees can be endorsed by clicking on the button under their picture on their nominations page, (e.g. mine is here, and all other nominees are being added to the directory as well). It turns out that we can each endorse a nominee once a day, and the suggestion is that we ask our readers and friends to endorse us once a day every day! Cripes!

Of course the activists which have the most common conditions will have many more readers owing to there being many more patients. Which leaves the rarer and lesser known conditions behind.

Last year there were six finalists for each award so this year the remaining three finalists for each award will be chosen by the judges on a points system. So there is still potential for a good health activist, with good presentation and information, to get chosen by the judges.

So… I’m crossing my fingers and asking you, my lovely readers, to click on the ‘endorse’ button for any CRPS and/or Dysautonomia bloggers that have been nominated who you’d like to support for this years awards.

Big hugs and thanks from me,

x

Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

x

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Photo Challenge for CRPS Awareness, Day 22

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

Day 22 – A picture of your smile

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My smile has different aspects behind it:

1) My smile is an expression of who I am. It shows the joys I find in the beauty of love in friendships, the world more broadly and even in the smallest things in life. My smile is more than a representation of how I cope, it is a representation of who I am. And it is real. It is not fake.

2) My smile also gets used as a tool to reassure others. When I am in so much pain that those around me do not know what to say or do, how to react, how to comprehend what is happening… I smile. It is not a fake smile, it is because I have lived with these conditions for many years, the smile is me showing through the pain. The smile is because, well, what else can I do, eh? Beyond getting me somewhere comfy to rest, a hot water bottle, a blanket, some painkillers… all that practical stuff, what else can those around me do to help? They can’t take away my pain, and they are in pain seeing how much pain I am in. So I smile. Because to have people in my life who haven’t legged it into the sunset, who still see me once in a while despite how helpless my condition makes them feel, that means so much to me. I smile my appreciation, my love, and my recognition that what they’re witnessing is affecting them too but that they still choose not to run away.

3) The people who don’t know about my condition. When I’m in pain and just trying to get on with things. I appreciate their care and concern, but they’d be there for hours if I explained all that is wrong with my health! Sometimes there is some conversation about it if they ask me, and if there is some time to discuss the basics. I appreciate people wanting to know, and I realise that raising awareness and understanding falls mainly on the shoulders of the patients. So I share information. I try to keep it simple but informative. And I do not get emotional about it. I care that they care. I am grateful.

But back in the day, before I had the knowledge about my health conditions that I have now, before I had such a calm acceptance of this being my new reality, and before I started to learn about how the body works and what I can do to help improve my day-to-day quality of life…. my smile was my shield.

Truly. A shield.

Work colleagues (not you lovely handful of ex-colleagues who are still my wonderful friends – this paragraph does not apply to you, xx) would ask me on a Monday morning the traditional “Hi, did you have a good weekend?” The apologetically toned answer “Well I tried to rest but the pain just never calms down enough for me to function” resulted in them giving me a weird look and walking away. Some felt awkward. Some just didn’t believe it. Even when coupled with an apologetic facial expression and apologetic smile whilst thinking: ‘I know this isn’t what you want to hear, but trying to make myself say yes is just too hard’. They stopped asking me. Started avoiding me. Didn’t want to know. Like I was being negative or something instead of apologetically trying to soften the reality for them.

Yeah.

Great. <sarcasm> !

So in the end I accepted the distance, but I would not lie. If they asked I’d just smile thinly at them. I mean, they knew the score, they knew they couldn’t take the answer if I’d bothered to reply, they just didn’t want to hear it. Sometimes I’d kinda say “mm, the usual”, but my face clearly belied my words, a wry smile says a lot! Sometimes they’d ask me out of sheer Monday morning habit and then suddenly look scared as they realised who they’d just asked!

That was the kinda situation when the fake smile would crop up. That was the smile-as-shield.

We have enough to deal with. If a fake smile and a quick exit removes us from more misunderstanding and emotional pain, then all to the good. There are others out here who do understand. Even if we’ve not met them in the 3D world they make such a wonderful difference to us in our hearts. Nearly all of my smiles are genuine, and the rare fake ones are saved for situations with strangers who do not know me. All who know me get real smiles, xx

I don’t have a photo’ of me sporting a thin wry smile! So I created today’s pic’ with my smile as a shield instead….

smile as a shield, B&W

x

Patient contact and self-advocacy on Social Networks

When it comes to social networks, Facebook stands out for me for two reasons:

Firstly, I am chronically ill and don’t get out much. I don’t get to see my friends unless they come to me, I don’t have colleagues to say ‘hi’ to each day, I don’t even have a pet to hang out with. I do, of course, have a Magic Dude! (that’s my boyfriend, for those of you who don’t already know 😉 ). His presence gives a whole new dimension to my life, for which I am most appreciative (a massive understatement, of course)! I also have a brilliant and supportive Local Friend, who pops round for tea and a natter every now and again. (We really must drag him out somewhere for his belated birthday celebrations)! But on the whole I just don’t get to see most of the people who I care about so much. And unless I’ve got an appointment with a medical practitioner who I haven’t met before, I tend not to get to meet new people either. So Facebook as a ‘social’ network is all the more meaningfully named for someone like me who just doesn’t get to socialise in the ‘real’ world any more. Facebook is my lifeline and my laptop is my window on the world.

Secondly, Facebook has a more direct effect on my condition, knowledge and treatment….

My condition is so complex and multidisciplinary that many medical practitioners do not know anything about it. Those who do know of it, tend to know it from the angle of their own discipline and thus do not have the broader multi-systemic picture. I therefore have had to become my own expert. I have had to acquire multidisciplinary information on my condition to be able to share it with practitioners to enable a clearer overall picture, better understanding of what is going on in my body and a better platform of knowledge from which to discuss symptoms and possible routes of assessment and/or treatment.

This would be a darn sight easier if I wasn’t a patient alone, searching the internet, only to find that information on CRPS is mostly limited to the view that it is a chronic pain condition to be treated as other chronic pain conditions. When we are new patients with no doctor to ask questions of, many of us turn to the internet, (a paper is being written on this, I’ll let you know when it becomes available). The trouble with this approach is that health information on the Internet varies in quality, (Morahan-Martin, 2004). As research moves forward the understanding of this complex condition changes and grows. There are old views of CRPS which are now obsolete, but they can still be found on the Internet as if they are current – there is nothing to tell us otherwise. A good example of this is the renowned ‘stages’ of RSD / CRPS which were discarded back in 2004 (see this page for more info) but can still be found all over the internet as if they are still thought to be relevant. No wonder so many of us learned to distrust information on our condition on the internet and instead turned to research journals to be sure that what we find is actually current.

This is where Facebook comes into its own for us patients. So many of us are already on the social network that it is very easy for us to run a quick search for one of many CRPS support groups on there. Anecdotal evidence suggests that CRPS support websites outside of the social network have become far less used as Facebook use has become more prolific. Nowadays this is where many of us patients finally get to meet each other. Even if there were more of us within visiting distance we would still find it easier to meet online as there are many days where even getting to the bathroom is outside our visiting distance! So modern social technology has brought us together.

On Facebook we can meet. We can feel reassured we are not alone, experience empathy from others about our condition experiences, we can share information, including research papers to show our doctors, and much more. Through discussing our thoughts, ideas and understandings of our condition online with fellow patients, who also have gathered a large amount of knowledge on the subject, we can refine our understanding, our ways of working, and find oodles of encouragement to keep on going. Whether it’s to get through physio sessions, benefits assessments, relationship hiccups stemming from condition complexities, or just simply to get through the day, the key is that we are not alone, that there are others with knowledge and experience who we can ask questions or bounce ideas off. There are fellow patients who ‘get it’ and they are just a few clicks of a button away. It’s a resource that I could never put a value on, it is truly priceless.

The added bonus is that I have met some truly wonderful people online. I have made friends – really good friends. We may be separated by time zones, but if you look at it from another point of view.. we are not restricted by time zones – we can meet so many people from all around the globe, so statistically speaking it is perhaps not that surprising that contact with so many people reveals some souls who fit beautifully with our own and who become truly dear to us in ways we never would have expected. Facebook has expanded my friendship group, who knew? 😀

I’m not on Twitter, maybe one day I’ll get round to it. I don’t have a mobile phone that connects to the internet. I do now have a Pinterest account, but the function of a picture sharing site is different to Facebook. Through the Book of Faces I have found long-lost friends, I have more regular contact with friends who I had not lost but who are geographically far away (which is anyone further away from me than my bathroom 😉  ), I have gained and clarified knowledge about my condition, shared information with fellow patients, I even have my own blog page on Facebook. So from a patient perspective there is no question for me which is my favourite social network, because only one has enabled me to come together with fellow patients with such an astoundingly positive way.

Much as I hate to love a big corporation on sheer principle, this particular one has truly changed my life, x

Fbk page

x

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P.S. If you are on Facebook… there is a superb research page specifically relating to CRPS called “RSD/CRPS Research and Developements” (recently a finalist in WEGO’s Health Activist Awards). The page is run by knowledgeable admin’s who are a mixture of expert patients, experts in the field and a fab combination of expert patient with medical training. Research is posted regularly, and it’s a great place to ask questions of a more medically focused nature. (If you want to come back and find it later, it is also listed on my ‘Useful Links‘ page).

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The reference mentioned in the text was:
Morahan-Martin, J.M. (2004) in ‘How internet users find, evaluate, and use online health information: A cross-cultural review’, CyberPsychology & Behaviour, Vol. 7, Issue 5, 497-510

“Useful Links” page for fellow patients

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For extra info’ and resources to help us improve our self-advocacy I have a Useful Links page. It includes links for research papers to show doctors, information to share with family and friends, organisations to contact for more information, wallet cards, autonomic physicians list, and more.

I will continue to add to this page over time. If there is anything that you would like to see added or any suggestions for links that could be helpful to other patients then let me know as I want this page to grow so that it can be as useful as possible.

Much love to you all from me,

x

Useful Links page

Crazy Sock Day!

Yes, you read that correctly… today is Crazy Sock Day, 2013! 😀

Crazy Sock Day 2013

And, yes… I am wearing my mismatched, loud stripey socks as I write this…

Crazy Sock Day 1

This is an event created by young Melanie Dickens to raise awareness about her conditions CRPS and Gastroparesis.

The premise is beautifully simple – wear crazy socks and when someone asks you why you’re wearing them you can tell them. Simple see? Go ooooon, you knooow you want to 😀

Melanie Dickens, Crazy Sock Girl, to post on blog with permission from her Dad Shawn, x

Super Melanie herself: Superhero and Gatherer of Excellent Socks
(picture posted with kind permission from Crazy Sock Girl’s Dad aka Super Shawn)

Here’s Melanie’s Facebook page created for this year’s piccies to be posted upon… https://www.facebook.com/CrazySockDay, and there’s plenty of piccies turning up on there already 🙂

There’s still time people, get your socks and cameras out and join in 😀

You can even post your own crazy sock piccies on your social network pages, that way your friends can see them and gain helpful awareness even if they aren’t online today.

It’s fun and it’s easy to do. I suggested this event to my friends and readers on Facebook. It’s something anyone can join in with, it takes very little effort and you don’t necessarily need to know loads about the conditions, it’s an awareness thing. It’s the amount of heart that you put into it that counts. If someone asked me why I’m wearing crazy socks then I’d most likely science them into a brain-overloaded stupor with my first coupla sentences! So trust me – you wouldn’t be bad at this at aaall.

So my suggestion to my friends (who I can’t expect to know aaaall about my health the way I do, of course!) was that it would be a great way to let people know that they can actively try to avoid getting CRPS themselves (hurrah! fantastic knowledge for friends and loved ones) by taking vitamin C after any injury or operation (see the top of this page for more info) and also by not putting ice straight onto their skin (always wrap it in something like a tea-towel) and vary it… on for 10 minutes, off for 10 minutes, and so on (as ice switches off part of the autonomic nervous system if the skin temperature drops below a certain point and when it’s switches back on again that’s when the troubles become apparent. See? Science-induced stupor alert. Somebody stop me! 😉 ). (For people who already have CRPS, well, we steer clear of ice altogether as it’s really baaaaad news for the majority of us).

Crazy socks *and* tea, could this day get any better?

Crazy socks *and* tea, could this day get any better?

My lovely Magic Dude good naturedly takes his role as Back-up Blog Photographer all in his stride. Although I do get a few funny looks when I ask him to take a piccy of me looking slightly, erm, unusual! And that little amused look cropped up when I calmly and seriously donned my kinda-sock-hat-thingy! 😀

Crazy sock hat thingy and tea

Erm… yes, well, it was a thought. Don’t think it’ll catch on, though.

I don’t usually get to go out on a Thursday. Wednesday I’m at home recovering from my Tai Chi clas on Tuesday, and then Thursday I’m at home preparing to be able to get to Tai Chi on Friday. So there’s no-one to ask me about my socks today, even the postie had no reason to knock on the door and get sock-blinded! Good thing I can wear them on here as well, then, eh?!

Today was a little different though. I got a letter through the post advising me that disability benefits peeps are taking a little longer to process my Disability Living Allowance form as they’ve asked for a letter from my consultant…… who I haven’t actually seen yet! *sigh* I have, however, had two days of preliminary tests in his department so I wrote a responding letter basically saying… ‘hey, he hasn’t even seen me yet, but if you get any info’ on the tests send me a copy coz I know nuffink as yet. Oh and P.S. you do know he’s only looking into the Dys’ stuff right? I don’t have a CRPS consultant as I’ve been living with it for over 13 years.’ Hopefully that’ll clarify things for them (I’ve told them all this already, but hey, reiteration often helps the penny drop, eh?)! Blah blah blah, enough of the serious, get back to the Crazy Socks, woman!

Having to put my reply in the post meant that I had to allocate part of my morning physio’ to getting to the post box and back…. whilst wearing my mismatched socks! Yay!

Totally normal!

Totally normal!

I didn’t meet anyone to talk to, but I did get beeped at by a passing car. Not sure if they were trying to let me know that I’d put odd socks on or whether they were beeping a beware to other drivers about the imminent brightness they were about to encounter, but hey, the socks got noticed!

Well done Melanie for creating a day that many people join in with and which is so effective owing to it’s simple and cheerful foundation. Wonderful stuff honey, and congratulations on your third Crazy Sock Day. I look forward to many more, x

WEGO Health Activist Nominations

Oh my, oh my, oh my, oh myyyyyyy! I’d been contacted by WEGO Health to let me know that I’ve been nominated for the Rookie of the Year Award a wee while ago, but today I opened up my emails to find several messages from WEGO about nominations for three other awards as well and I am currently still on a floaty cloud of happy surprise!

Thank-you lovely readers for being so kind as to nominate me for several awards for WEGO’s 2012 Health Activist Awards. I am totally blown away by your kindness and your ever wonderful and heart-warming support. I cannot find the words to describe being transported from a morning of tired slogging through my rather bland porridge (I think my tastebuds may have got used to me accidentally tipping far too much cinnamon on, my hands were less wobbly today and my tastebuds were rather sorry about that!) to “Wheeeeeeeee! Oh good grief! How blummin’ lovely are theeeeey?” *wibble*

I have now been informed that not only have you nominated me for 2012 Rookie of the Year, but also for 2012 Health Activist Hero, 2012 Unsung Hero and 2012 Hilarious Health Activist! Wow! I’m totally blown away! Thank-you so much, I am challenged to find the words to adequately express my feelings as I’m still in a state of happy surprise! (With my ANS it’ll take a while for the wibbles to settle down, too, so I may as well go with it and grin like an idiot for a few hours, eh?)!

I want to say to keep voting for your fave health activists online because there are some truly amazing people that I’ve met out here in the online ‘cloud’, but the voting closed on December the 31st and so now it’s over to the WEGO Health judges to get some mega-reading in. Lawks, they’re gonna be busy! There are some amazing bloggers out there and I salute them all. I’ve met wonderful fellow bloggers and fellow patients since starting this blog and there are no words to adequately express the strength, love and beauty that is apparent in your words and actions online. I am honoured to be counted among you and I adore the support and sharing online that helps so very many patients living with a massive variety of health conditions. Each and every individual doing this makes a positive difference and has priceless value because of it, xxx

2012 WEGO Nominations

Always get copies of your hospital notes

Towards the end of last October I contacted four different local hospitals asking for my medical notes from the last two years of assessments and treatments. This was prompted by my upcoming consultant appointment in London as the specialist nurse had advised me over the phone that any information I could forward for the consultant would be very helpful. I then received my first big form/booklet to fill in with regard to the disability benefits changes in the UK and realised that medical back-up would be very sensible for that, too. Though the notes did not arrive in time for the Incapacity Benefit to Employment Support Allowance application and, as it turns out, my only contact thus far in London has been two days of tests.

I received my final tome of medical notes this morning, so the scores are finally in…

Local Cardiology hospital: 10/10 for posting my medical notes to me within a couple of days of asking, and for no charge at all. 🙂

General hospital about 40 minutes away (Respiratory consultant & specialist respiratory physio’): -2/10 for eventually posting my medical notes at an upfront cost of £10… to a completely different house! (Super-sleuth postie managed to get it to me eventually). 😦

Local General hospital (Pain management, and respiratory physio’ including auriculotherapy & acupuncture): 4/10 for sending me very comprehensive notes also at a cost of £10 (I’ve just scanned in aaaall 56 pages!), but it took them from near the end of October until today to actually get them to me. :-/

Specialist hospital’s neuro department up in the Big Smoke (London): not yet entered for scoring as contact is ongoing, I’ll ask for copies of the notes once there’s more to ask for (I’m still awaiting an appointment to see the consultant after those two days of tests, y’see. Hopefully I’ll get a letter soon with an appointment date for this month or next month. I hope).

Gee whizz, after all that excitement I need a cuppa!

If you get can copies of your notes you can have assistance at your fingertips when seeing other medical practitioners. I have lost count of the times practitioners have said “And who diagnosed you with CRPS….?” because they need to double check that the information I’m giving them is correct. So I find that a copy of my diagnosis letter in my handbag saves a lot of time, and since asking for my notes I also now have various medical letters and scribblings with the magical words “autonomic nervous system problems” and similar. Very helpful! That way I can bypass the doubt and cut to the chase.

Here’s wishing you all a positive 2013, I hope you get all of the appointments and support that you need this year. And on that note, here’s a little video from the RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) in the USA about the importance of us becoming our own advocates to keep our health on track. In my experience, becoming my own active health advocate is the best thing I ever did.

Lots of love from me,

x