"Suffering the Slings and Arrows of Outrageous Fortune"

My child has a knack for getting injured in ways that make doctors, and her parents, shake their heads…This one was pretty memorable but, thankfully, all’s well that ends well.

On Fridays, our homeschool group meets for classes. Em is taking a couple classes but  is spending her time 3rd period ‘helping’ with the 2/3s class, which translates into playing with them and frequently getting hurt by the precious little miscreants. (I say that with the utmost love for the little darlin’s. It is the most dangerous place in the entire building for her but it is not fair to blame the little ones – it is almost always Em’s poor decisions that cause her to get hurt. Like, rolling around on the floor with several toddlers piling on. Or sitting in a Rubbermaid tub  and allowing the children to tip her over time after time. And spinning around and around with a child until they are both so dizzy they fall down. And so on and so forth.)

This time, she was playing with one of the kids – laying on her back with the child sitting on her belly. Another child came running full speed and launched himself at her, somehow punching/hitting/whacking her in the eye. I found her after class, nearly in tears, rubbing her eye and clearly in pain. Then she mentioned that there was a black shadow covering about a 1/3 of her eye and around the outside of her field of vision. Her vision was blurry. She had seen flashing lights when it happened. So, I was quite concerned, knowing as I do that her EDS makes her vulnerable to eye problems. My concern only deepened when I got home and googled the symptoms. It sounded a whole lot like a detached or torn retina before I hit up Google for answers and even more so afterwards.

We hemmed and hawed about it, not sure if we should rush her to the ER or if it could wait until Monday. Then Em started saying that it was better – the shadow was receding and all was fine. I suspected that she fibbing just a bit, that she wanted to avoid the doctor because she didn’t want to be blown off or be told nothing was wrong and that we were stupid for going. Or that she was concerned about money, even though we assured her insurance would cover it and money was not an issue.

We ultimately decided to wait until morning and see how she was. Saturday morning, when she woke up she was still in a lot of pain and she confessed that the shadow was not gone quite as much as she had indicated the night before  – I was pretty sure she needed to be seen, sooner rather than later but hated the idea of going to the ER. These are the moments that are so darn tough…don’t want to overreact, don’t want to underreact; her bout of appendecitis was fresh in my mind and makes me doubt myself.

I knew if I called the pediatrician, he would just tell us to go to the ER. If I could even get a hold of the geneticist, he would say go to the ER. I was pretty sure that they would examine her in the ER, then send us to the opthamologist on Monday anyway. I really just wanted an informed opinion to guide us – this is what I ALWAYS want. Well, it finally occurred to me that I could just call the opthamologist (although I despise the one we currently have) and talk to an on-call doctor.

So, I did and was talking to the doc (not the one who proved himself to be a moron a few months ago, fortunately!) within half an hour – wishing I had done this the night before! He felt she needed to be seen and said he would meet us at the office in a couple hours – it is closed on the weekends. So, we got there a few minutes early. He had a football game on in the waiting room, was dressed in a Broncos jersey – clearly pulled away from his weekend activities – and took us right back to the examination room. He did a very thorough exam and was happy to tell us that all was well – no sign at all of a torn or detached retina and that her lens was where it needed to be (methinks he did a bit of research on EDS before he saw us or he might have even known enough without researching it).

Em got to hang out and make friends with a lonely little puffer fish who took a serious liking to her as she stood by the office fish tank waiting for her eyes to dilate; her parents got to streamline the whole diagnostic process by going directly to the opthamologist (a nice one at that), totally skipping the typical, maddening ER experience where we have to spell   e-h-l-e-r-s  d-a-n-l-o-s and in which we  usually are sent home with little or no help and are made to feel like idiots. As terribly frightening, vision threatening eye injuries go, it was quite lovely.

Also, I was right about her fudging the truth to avoid the doctor but wrong about her reasons. She was pretty well convinced that something was really wrong, knew enough that the answer could be another surgery and just didn’t want to know. She went for the head-in-the-sand route. Can’t say that I really blame her, but we have since talked about how ignoring problems generally only enable them to grow worse. And that not knowing can be far worse than knowing. She was very relieved to find out all was well and is no longer torturing herself with the unknown.

We are very, Very, VERY fortunate that her eye is fine and her vision is not threatened. Although, there is no explanation for why she has a shadow around her peripheral vision, other than she got whacked in the eye. Hopefully, that completely disappears (it is better and the blurred vision is gone) soon and her vision ends up completely normal. We are supposed to see the opthamologist in a month for a follow up, just to make sure everything is ok.

All in all, pretty much a normal state of events for us and we are breathing a sigh of relief, again.

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Comments on: "Another exciting weekend…" (4)

  1. When to seek medical help is something I’ve really struggled with. And the dislike of seeing new doctors is also something I’ve had to get over, because they are just so damn happy to write you off as a hyperchondriac when you have EDS. Last weekend I dislocated my knee for the first time, and am finally conceding defeat and going to my doctor tomorrow, fully prepared for a lecture about why I definitely SHOULD have gone before on this occasion. Oops…!

    • I so agree. People who do not live with EDS cannot understand how high the stakes are – in both directions. Overreact, show concern about a ‘thing’ and you risk being called a hypochondriac or, in my case, a nutty mother. Underreact, and you risk serious, long term consequences. Any other parent would run to the ER every other minute if their kid randomly ended up with 1/2 of my kid’s daily symptoms, but I can take a wait and see attitude when my kid says her back popped and her legs are numb.

      I am with you – it is absolutely maddening! Hopefully you do get concrete help and are not treated to a lecture – that just would make it that much harder for you! Will be thinking of you tomorrow and hoping there is no lasting damage. Good luck!

  2. I have found this “do an end-run around the whole system” approach very handy for injuries too!!

    We even have a “nurse on call” phone line here which I’m sure is very handy for normal people wondering if they should seek medical attention, but is utterly USELESS for EDSers because they very sensibly err on the side of caution. I understand why they do it, but it’s infuriating anyway! And then the primary care person will pretty much do the same – if I tell him that I’m happy to just sit and wait then he’ll agree, but if I feel like that then I’m probably not going to see him about an acute thing anyway.

    For me a trip to the hospital will probably mean weeks of recovering from the effort alone, and possibly also months of rebuilding my self-belief and self-trust if they take the “you’re nuts” or “you’re a hypochondriac” routes of non-understanding.

    If I can avoid the process by seeing somebody who I already know “believes in” my disabilities and has some basic understanding, even if their speciality isn’t exactly right, it’s often better. As long as they know enough to rule out serious stuff – like your optometry person – that’s all the ER is good for anyway.

    I actually had almost the identical situation that Em did a few months back where I got a weird black shadow in my vision and went to my local optometrist who determined I didn’t have a detached retina or dislocated disc. Mine was probably a migraine, as best as we could figure, but in any case it went away and hasn’t recurred so that’s fine!!

    • Going to the ER is just opening a pandora’s box…to be avoided whenever possible!

      That being said, vision is nothing to mess around with and prompt care can save it if the issue is a detached retina. Glad your shadow was nothing bad. It is a scary situation to have, though!

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