Monday, 22 October 2018

Health (and life) updates - October 2018

Just some housekeeping and catching up! I've been super busy with various projects the last while. To read my last health update, click here. I've exciting news tomorrow, but all this malarkey first.

Physio, bracing and the never ending saga of the hips 


I continued with my local physio briefly, but we have naturally reached the end of the road. Although I know she is available any time I need to contact her for advice.

I was yet again denied surgery for my hip -this time by a consultant in Beaumont. On arrival neither the locum nor the consultant had heard of Ehlers-Danlos syndrome, but of course, as always, ten minutes later (after I told them what it was), they were experts. Spouted off rubbish about how the surgeries to help preserve my hip may make me worse, due to my EDS, in that more than likely/ in most cases the surgeries are unsuccessful. No stats, no real information. This contradicts what I know from other EDS/ hip dysplasia patients who are living their life to a much higher level of mobility (hip wise, at least) than they were before. While this is all anecdotal, clearly, at least I had anecdotes. These doctors had no information. There are indeed some issues with EDS patients having surgeries -for one, we take longer to heal. Major surgeries need to take certain criteria into consideration (for say, the likes of surgery for Chairi Malformation). These were not the issues they brought up however, in fact they just rambled.

On entering the orthopaedic clinic I first met with the locom who discussed my X-ray and noted how I didn't yet have arthritis. Those of you with similar conditions will know how consultants and doctors alike hate using the word "arthritis". They think it will send patients into uncontrollable hysterics, that we will demand action. Especially women. We will become so hysterical our vaginas will fall off and we will wither and die with the shock *clutches my pearls*. At my age, with untreated hip dysplasia, I would be extremely lucky to not have some arthritis. I'm often told I have "damage", indeed apparently I have more "damage" on the healthy hip rather than the dysplastic one. Either way it's a non issue -I have much more pressing issues that the natural occurrence of arthritis! Plus I am on painkillers and medications that may be used to treat arthritis anyway, so a sub diagnoses of such I pretty irrelevant.

So the consultant enters, babbles on about why I can't have the surgeries to save my hip -We would make you worse, they aren't good surgeries, your EDS, your EDS, your EDS... When they realised both their lack of knowledge of EDS and even recalling the names of the hip surgeries were showing, the consultant decided to play another hand. "You have arthritis so can't have surgery". Wow, what a game changer, after twenty minutes of trying to work one angle lets just go with this instead. My eyes darted to the locom as I spoke, "Oh really, it's just I've been told I don't have arthritis". "Yes, you have arthritis" the consultant repeated, proud as punch with his decision to whip out the A word as it suited him. This isn't my first surgery rodeo, so while I understand that yes, bad arthritis makes a joint unsuitable for surgery, that simply is not the case here. I have quite mild arthritis/ "damage" I gather from previous X-rays, and my healthy hip is greater effected than the hip that actually needs surgery. Certainly not enough to impede any needed surgery.

Friday, 20 July 2018

The one where they got secretly married (nay neH)

Yes, yes... nay neH is "Just Married" in Klingon

So I've briefly mentioned this in a couple of my last posts and I'm sure some of you were like, wait what, did she just swipe over all that gossip of eloping? Like some kind of celebrity. And yes, yes I did.

But now I'll get all basic bitch and gush about my wedding day for those who want to know the full story -so if you're uninterested look away now.

The planning


We're both (myself and Bicky) quite practical people. Laid back, too. Bicky works in the wedding industry so sees his fair share of nuptials. While they're all wonderful celebrations for the happy couple and their families, it's just another, average work day for him. I've never had this childhood fantasy of a fairytale wedding day with a huge white dress, cake... None of that stuff. We're both also (super duper califragilistic) atheists, so a church was never going to happen either.

With all that in mind, and not wanting a big party or fuss or such, I always assumed if we were to bother getting married that we just wouldn't tell anyone. Perhaps, not at all. People might find out way into the future, if one of us was in hospital for example, but I would be content in never mentioning it otherwise.

After a brief discussion last winter (2017) we decided to get married in secret (but to tell people afterwards, as we kinda wanted to wear rings). That was it really. All very practical conversations.

  • We applied to give our three months notice of intent to marry on March 5th, 2018. 
  • Picked a registry office that was open the day we wished to wed.
  • Booked a hotel in to stay that night, the stunning Farnham Estate
  • And then a house in Achill for the week for our honeymoon (we just told people we were off on holidays to Achill).