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If you're on Facebook, I would love if you would 'like' me at DefyingRA - occasionally when I haven't got the energy to blog properly, I will still manage to post something quick on there (including the odd photo of people doing crip-cool better than me in 24 carat gold wheelchairs, and so on)...

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Ulysses the unpleasant.

Stormy weather.  Nothing says a massive "screw you, you're going to feel revolting today" like some uncharacteristic electrical activity in the skies!

This isn't a picture of today's storm, but I dare say it's not terribly inaccurate.

Thankfully (?) I pulled up a little rougher than normal after my propofol sleep for endoscopy #3 yesterday, and being a later appointment than usual my gastro gifted me the extra day off.  After all, a dopey pharmacist won't be saving any lives... but as it turned out, my body was pretty grateful for the persisting effects of the propofol and sleeping for much of the day.

So scope #3 wasn't exactly the success I had hoped for.  Ulysses the Ulcer (Ulysses, because it means wrathful and that's entirely appropriate!) is a) still there after 4 months of very intensive treatment and no NSAIDs or steroids, and b) still bleeds on the mildest contact which means I am leaking blood every time I eat.  This is bad news, clearly, because we all have a limited supply of the red stuff, and because I am really starting to crave chilli and curries and all things eye-sweatingly-hot!  To be perfectly honest, I would seriously contemplate selling my soul for a big dose of steroids and a Thai Green Prawn Curry!

But again, we wait.  This time it will be 6 months between visits, so I have 24 weeks, or 168 days (actually, we've already knocked one off so 167) to use my willpower to heal Ulysses once and for all!  Because 10 months without Thai food is going to kill me if Ulysses doesn't!

Never give up.

How to get instant cripple cred.

Gaga puts us all to shame. Yes. That's a 24 carat gold wheelchair.

Excessive?

Mmm... Just a bit!

I think Jerry may have had RA...

There's no "I" in team...

Anyone who knows me knows that I'm all about the team.  Everyone doing their bit to get the team across the line.

I'm also the first to admit that if it weren't for my team, I'd have broken down long ago.

My team consists of a number of people, all of whom play very different but nonetheless incredibly important roles in keeping me going in the day to day of life.  In no particular order, my team includes:

• My family.  Mum, Dad and my brother are all equally huge contributors - whether it be playing taxi, bringing me food, delivering my medication, or just general love and support, they are there 110% of the time, giving me 110% of their love.  Without them I would be nothing.
• My physio, Liz - while she hurts me occasionally, I recognise that her causing me pain is all in the name of taking it away!  She mixes traditional physio with dry needling and is also great comic relief -it's more like making an appointment to catch up with an old friend than to see a health professional.
• My massage therapist, Kristy - again, there is some pain required to get some longer-term gain, but it's all worth it.  She mixes massage techniques depending on my level of pain, including cupping, which have left me with some pretty suspect bruises in the past... and while I lay on the table we catch up on our favourite TV shows and exactly what it is that we need to be watching next!
• My general practitioner - while he is the first point of call for all my medical issues, I know that I am blessed to have such a thorough and caring man taking care of me.  We have an understanding - while I tend to vary from downplaying symptoms to pacify my panic to being a borderline hypochondriac (courtesy of a little more knowledge than is safe), I trust him and his knowledge completely - and know that he is looking out for me and my health.  That kind of trust cannot be bought!
• My rheumatologist - despite a few bumps in the road, without my rheumatologist I would have been a proper bed-bound-and-broken RA patient years ago.  I appreciate the trust he puts in me, that I will give him honest feedback on the efficacy of a treatment, or whether or not we are making progress - obviously his ability to prescribe 'the good stuff' ensures him a spot on the team - but he also happens to make me laugh which never hurts!
• My colleagues - for the most part, working with a bunch of health professionals provides me with a really supportive and caring environment in which I get to work.  Particular colleagues take this to a whole new level - instead of asking how I'm feeling, they simply ask where I rate myself on a scale of 0 to 10, where 0 is dead (or wishing I were) and 10 is turning-cartwheels-and-popping-backflips healthy - and then offer to take some of my workload  to make my day more bearable.  These colleagues - the special ones - are few and far between, but they make the earning-money-to-pay-medical-bills part of my life far more enjoyable!
• My friends - a diagnosis like RA changes your life, and not necessarily in the good way.  The thing it does do very efficiently is filter out the friends in your life who will be beside you through thick and thin - the ones who love you irrespective of how many catch-ups have to be postponed or cancelled, the ones who will think of activities that you can do comfortably rather than what you may have done once upon a time, the ones who know and acknowledge that sometimes the best Girl's Night is not out, but in.  Those friends are worth their weight in gold - and thank heavens for them!

Really, when they drop the bomb that you have RA, they should hand you the instruction manual and the first chapter should be the importance of having the best team you can surround yourself with - perhaps that instruction manual needs someone to put pen to paper (or swollen and crippled fingers to keyboard)...

Plantar fasciitis...

... wrecking lives since the invention of bipedalism!

Thank heavens for ice packs!