Until last night I hadn't been in an ambulance since I was 8 years old and I shattered my ankle in school.
I'm pretty adept at dealing with injuries myself. I usually strap up my own fractures, my dislocations usually spontaneously reduce (the thing about joints that dislocate easily is that they pop back in easily too). I'm generally used to pain and injuries without seeking medical help.
But last night I had no choice.
My father was eating dinner and he aspirated a sausage. I slapped him on the back and hurt my shoulder. He coughed up the sausage all on his own while I was talking to the 999 operator. I said "oh, he's coughed up a piece of meat the size of a finger. But I still need that ambulance for my shoulder."
The paramedics were lovely. Well, at first they couldn't give a fuck while I was standing in front of them saying "I've got osteogenesis imperfecta and I think I've broken my shoulder." It eventually transpired that the 999 operator hadn't updated them, even though I'd told her quite clearly what had happened. So they arrived looking for an "81 year old choking victim." (I'd also told the 999 operator clearly that he's 80.) So given that they were looking for someone who couldn't breathe, my shoulder didn't matter at all. But once they ascertained that my father was breathing and I was now the patient; they were lovely and offered me perfect medical care.
The loveliness ended once I got to the hospital.
Well, not the second I arrived at the hospital. For a while I remained in the company of the paramedics because there were no hospital staff around. They hooked me up with more entonox because the one in the van crapped out. Even the paramedic admitted that it wasn't supposed to be making that noise. A friend of mine broke her toe recently and posted a gas & air selfie on Facebook. I decided I might as well join in for something to do while waiting for hospital staff to appear.
Eventually a nurse did show up. She was mean. She didn't actually use any unacceptable language, but from her facial expression and tone of voice you could tell that she thought I was the scum of the earth. She loathed me before I'd even said a word. At first I figured "well, it's Boxing Day. I'd be in a bad mood if I had to work too."
Except she was perfectly convivial to the doctors, the porter, the female paramedic. She gave the male paramedic a flirty wink and a grin. The unsuppressed contempt was for me and me only. Before I'd even said a word.
Obviously, during the handover, the paramedic mentioned that I'd had a dose of oramorph in the ambulance. The fact that I have multiple medical conditions that require morphine should not make a nurse hate a patient. If you're a nurse who doesn't like people who take prescription medications, you're in the wrong job. The drugs were clearly mine, the label explicitly stated that they were prescribed to me, I wasn't illegally abusing drugs. But you know what? Even if I had no painful medical conditions and I was a junkie who had no physical need for strong painkillers: I would still deserve to be treated with politeness by medical staff. Rudeness wouldn't make my shoulder magically better.
She can't even claim "I thought she was just a drug seeker" as a defence for her behaviour seeing as how I'd brought my own fucking drugs with me.
But I suspect she'd have hated me anyway. The painkillers I take were just fuel on her bitter little fire.
Her and the doctor who'd come along both begrudgingly agreed that they should probably take an x-ray to be on the safe side. It was quite clear that their assumption was that I had no injuries whatsoever, and they were just humouring me before kicking me out. I guess they were thinking "we'd better give her a zap of radiation so she can't write a complaint that we didn't even bother to x-ray her." Rather than the professional "lets order this essential medical test and carefully scrutinise the results, ordering more tests if it doesn't give us a clear answer as to the nature of her injury."
I feel I need to make clear at this point: I haven't named the hospital publicly, and I will not be doing so until the complaint has been processed. If you happen to know the name of the hospital I went to from my "friends only" Facebook post, please keep it quiet until the complaint has been followed through. I trusted you to share that information with you. Please respect that trust by not making the information public.
So I went for an x-ray. Like the paramedics, the radiologist was lovely. Well, one of them was lovely, conversational and warm. The other one didn't really say much to me at all, but at least she didn't express pure contempt like the nurse, or an assumption that there was nothing wrong with me, like the doctor did.
They took x-rays from 2 angles. If you've got a clearly displaced break, it's usually pretty obvious from most angles. If you've got a small fracture that doesn't go right through, you have to x-ray from exactly the correct angle in order to be able to see it.
The last time I went to A&E was because I genuinely didn't know if I'd fractured my rib or not. They took one x-ray and declared my rib to be fine. The next day I found out that there definitely was a fracture there when I bent down while gardening and that little fracture went right through and became a proper break. I didn't only feel it snap, I heard it snap too. I packed up my gardening gear, came inside, took some painkillers, watched The Great British Bake Off, then cooked myself some dinner. There was no point going back to hospital. I'd only gone the day before because I wanted an answer. Once the little fracture had turned into a clear break, I had my answer; no need to go back. They don't do anything for ribs unless it punctures your lung.
Once I crush fractured a couple of vertebrae. At the time the radiologist declared that there was nothing wrong. A decade later my x-rays were looked at by an expert in osteogenesis and he immediately said "you've done something here..."
"I knew it!" I replied.
I could go on, I have loads more examples. But the point I'm trying to make is that doctors often miss fractures on OI bones because our bones really aren't that opaque on x-rays. These experiences aren't exclusive to me; I don't think I know a single person with OI who hasn't had fractures missed that have ultimately turned out to be very real.
Once when I was a pre-schooler I didn't have just a little fracture, I had a proper displaced break go unnoticed by a doctor who just wasn't doing his job. My mum took me back to A&E again the next day because I still wouldn't move my arm: I was treated by a doctor who could be bothered to actually look at an x-ray, and was diagnosed.
The doctor I encountered last night took a quick glance at my x-ray, declared "no fractures. You're lucky. It's just a soft tissue injury. Goodbye."
I can't move my fucking arm at all, but I'm lucky? Even if it transpires that it is "just a soft tissue injury," that doesn't mean it isn't serious. Nasty soft tissue injuries can be more painful than fractures and take longer to heal than fractures. If they heal at all. Soft tissue injuries can require surgery. Soft tissue injuries do not show up on x-rays.
There's a common belief among doctors that there's only one type of injury that people with OI can sustain, and that's fractures. I've even met "experts" in OI who've fallen into that trap. The reality is that OI most famously affects bones. But it also affects tendons, ligaments, blood vessels, skin... In fact it affects every tissue in the human body. While many doctors seem to believe that OI is an immunity against all other injuries; the reality is that OI makes us more vulnerable to tearing tendons, etc.
Oh how I wish I was at home in London right now. The first time I went to my local A&E, the doctor I met was meticulous. The radiologist said he couldn't see anything wrong with my x-ray. But when the doctor reviewed it she noticed a random speck of bone floating around in my foot. It was about a millimetre long and about the width of a hair. But she studied and studied my x-ray until she spotted it. She couldn't explain it, that took an orthopod. But she noticed it and realised it might be relevant.
It turned out that I'd torn a tendon out of the bone. The tendon that's responsible for rotating your foot inwards like the movement involved in moving your foot from the accelerator to the brake while driving. That tiny speck of bone was a little chip of bone that had been pulled off when the tendon came out.
I wish I'd encountered a doctor with her diligence last night.
Usually when I tell people about that injury, they start wincing. But, actually, while painful, I could still walk on it. Well, the small amount I can walk anyway. In fact I could still move it for the first 2 months after the pain started until my foot eventually decided "nope, not moving any more." It was my inability to move it that made me finally give in and go to the hospital, not pain. Sure, it was painful, but within the realms of my pain tolerance. It wasn't pain preventing my foot from moving, it just wouldn't budge.
This shoulder? So not within my pain tolerance. And the reason I can't move it is because of pain. I can break a rib one evening and then lift my wheelchair in and out of the boot of my car the following day. For me to be unable to move something at all because of pain... Well, that hasn't happened since I snapped my humerus aged 9.
After I'd been kicked out of hospital, I again encountered human decency. When I got in the cab I failed at my first attempt to do up my seatbelt. My left hand is dominant and I was trying to do up a seatbelt on my left hand side with my right, non-dominant hand. (Because if I sat in the back seat with a right hand side fastener, that would have meant the belt going over my left shoulder.) He offered to help me, but I managed it on the second try.
I involuntarily gasped with every bump in the road we went over. He sounded like he felt so guilty for inflicting pain on me. Unlike in the ambulance, I didn't have entonox to suck on (well, until it gave up towards the end of the ambulance ride, anyway). I wound up feeling sorry for him because he knew he was causing me pain, felt guilty about it, but couldn't help it.
And now there's my poor cat. She keeps trying to affectionately head bump my arm. I can't explain to her "please express affection towards any part of my body except that arm." So I have to just keep pushing her away and she looks ever so upset. She could give @mysadcat a run for his money.
As for my dad and his sausage? That's twice I've visited him in a row where he's inhaled food. If me refusing to come visit until he sees a doctor to discuss his aspiration issues is what it takes to make him see a doctor about his aspiration issues; then that's what I have to do before he kills himself on a KitKat. If I don't threaten such measures, he'll just carry on like this until his death certificate reads "cause of death: Steak and kidney pie."
But for now I'm dealing with the worst injury I've had in more than 25 years, and have had no medical treatment for it whatsoever.