All it takes!!

All it takes to badly hurt a ligament is a simple movement that isn’t exactly in line…

All it takes to crush a healing journey is a specialist’s ego…

All it takes to change a course of chronic illness for the better or the worse, is a diagnosis, a word, or two simple words…

All it takes to make a difference is a specialist who cares, who hears us …

If I kept going on this list for only my own life we would literally be here forever. It is the little things that change each direction. The good things and the bad! It was a simple tripping over a suitcase that did my LFI, it was a simple slip on a drop of water on tiles that ruined my right wrist fifteen years ago. For me it is the little things, and the culmination of those little things is starting to become big things. Without EDS none of these would make a difference to everyone else, but for me they are little but I have never fully healed from any of them 😦

Last Thursday I went to see the plastic surgeon who did my last surgery and he HEARD me! It was the little things that he asked and said that made all the world of difference! Yesterday I got a call from the hospital asking me a make a time to go in for an abdominal CT scan. I HATE having stuff injected into me, and ESPECIALLY radioactive stuff, and so having a CT rather than an MRI fills me with dread, and as I said in my last post, I am worried that the hernia won’t show itself in all it’s glory if I have a CT or MRI lying down seeing as it didn’t show on any of the Ultrasounds when I was lying down, only when I was standing up. So when they phoned me and said that I need the CT, I was concerned to say the least. I don’t think that people who hardly ever have invasive tests or many doctor or hospital visits can ever fully appreciate what it is like when you have suffered decades of tests, waiting rooms, been poked, prodded, made ill, suffered side effects, anxiety, you name it. So if this is going to get the same result as the other tests lying down then this is NOT something that I want to put myself through.

So I emailed the surgeon and asked him what the thinking is. On Thursday had told me that he would review my pics from the ultrasound and bring me in for further imagining, but I had forgotten to ask him about the standing up versus lying down thing. So I sent him a quick email and got a reply within fifteen minutes:

“Hi Jen,
I had a long discussion with the radiologists as regards the merit of CT versus MRI versus US and they felt it best to start with the CT. If they can’t find anything get them to call me whilst you are still down there and we will work something out”

All it took was a reply and the assurances and I feel SOOO much better about having it tomorrow!!

I thought I would share his email in it’s entirety because it’s the little things that make this a really big deal for me! Replying as soon as he got my email (which could have been longer had he been in surgery not at his desk, however seeing as he WAS at his desk, he COULD still have left it till later or got his secretary to answer whenever etc. So the response was fast! The answer was also the complete opposite of dismissive! I feel that he HEARD my concerns and instead of just brushing them aside, he addressed them. Not much detail but enough to show me that this was well thought out by a number of people. And thirdly the fact that he is happy to be in the wings and be called in if they can’t see the hernia well!! This means that I won’t have to wait days or weeks to hear what they say, or in the event of them not being able to find it (and/or what is going on with the ovary, uterus etc) then they will address planB there and then!

All it takes is a little effort and he certainly did that!

So tomorrow morning it is CT scan and yes my husband is coming with me and moved work around again for me!!!! YAAAAYYYYY!!!!!! And I HATE the idea of the scan, but I am feeling confident from the little things, that this is the right thing to do and that things will start moving forward again !

And again… all it takes is something little and the changes are massive: Yesterday I thought “oh I can reach up and turn off the ceiling fan myself!” … but I was wrong! …it was the tiniest thing … just reaching up on my tippy toes and pulling the cord! But my LFI screamed back at me and my Achilles tendon audibly went snap crackle pop and cried out in pain!! UGH!!! Just like that, in a second, from the smallest movement…

You would think that I would know better by now wouldn’t you! … except that while it is the little things that have struck me down my whole adult life, I have also been able to do some really big things, so I am not sure that my brain will ever remember everything that I should and shouldn’t do!

It is the little things of chronic illness that nail you whether you want them to or not, it’s the little things that get you down, and it’s the little things that I still can do that make a HUGE positive difference! I am never without a crutch or wheel chair out of the home, mostly for protective reasons but also because I simply cannot walk very far any more. But one of the little things that I am SOOOO grateful for, is that for the most part, at home I am pretty mobile. I never walk far and if I need to stop I can. The distances within the house are small, and I always have lots that I can do either sitting down or sitting up in bed. So for much of the time that I am home I get to feel quite “normal”.

But now that my foot is gone again, it is back to having a crutch even at home and that is frustrating!!! Now I just have to make sure that I REST it and don’t do anything silly!!


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