"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘funny’

One more thing…

Thursday morning, Em  told me her ear was feeling funny when she woke. She had tried to gently clean it out, she used a Q-tip (just the tip, didn’t even insert the cushioned part all the way) but heard a big pop and it hurt a lot. She couldn’t hear out of that ear, so, although it seemed unlikely, I was concerned that she somehow managed to perforate her ear drum or that it was infected.

So, we talked about it and waited a little while to see if it got better and discussed it some more. And, decided to head to Urgent Care. Her ears were filled with wax so they had to clean them out.

(We had an entertaining moment when the nurse casually mentioned she was going to “shoot” water into Em’s ears, while holding, what looked to Em, to be a gigantic hypodermic needle. It, of course, was not a needle, but Em thought it was. I don’t know which she was more concerned about – getting “shot” in the ear with water or getting “a shot” in her ears. The nurse hastened to assure her there was no shot of any kind forthcoming – it was not a needle but soft plastic and the water would be gently squirted into her ears. We all got a good laugh out of that little misunderstanding. It is possible that I thought it was funnier than Em did but she did laugh.)

At that point, I was hopeful that her ear drum was fine, there was no infection and just cleaning out the wax was going to be the answer.

But, once the doc was able to look in her ears, the painful right one was infected. At 16 years old, she can now say she has had an ear infection. For all of her issues over the years, one thing that was never an issue was ear infections –  I am pretty sure this is her first. And my son only had one – when I was in the hospital recovering from my hysterectomy, my husband brought him to visit and he confided that his ears hurt. They trooped down stairs to Urgent Care and, sure enough, he had a double ear infection at the most inconvenient possible time. So, this ear infection thing is a little foreign to me – I didn’t even deal with Luke’s because I was in the hospital.

Seems odd, having an ear infection out of the blue like this, at her age. Is it just a one off , a fluke accompanying some virus? Is it an indication that her immune system is down? Is it a sign of problems to come? Who knows.

All I know is that she feels awful. Her ear hurts. Her head hurts and noise is painful. She isn’t sleeping well. She can’t eat. The antibiotics are making her more nauseated that usual. It has been 4 days and she still feels absolutely terrible. She is being referred to an ENT and I think that is probably a good idea. She is just so complicated and this is just one more thing to deal with on top of everything else.

 

My challenge…

If you are on Facebook, you probably have heard of the ALS Ice Bucket Challenge. If you have never heard of ALS (Amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease), it is a truly a horrible disease that profoundly affects the lives of the people it touches. The ALS Ice Bucket Challenge is all the rage right now  – it has raised awareness in a big way and has raised a lot of money (millions more than this time last year) that is going to research and to local ALS chapters that help families living with this awful disease.

When my best friend from high school challenged me, I didn’t accept because it is cool or fun but because it is a worthy cause: I am thrilled that ALS is getting much needed awareness and am happy to be a part of it. So, my hubby held the camera and my darling daughter gleefully dumped a bucket of ice water on my head. Em’s laughter at her poor drenched mother at the end of the video is so sweet…what you don’t get to see is her doubled over, laughing hysterically.

 

 

Anyway, I am challenging you, my readers to do this challenge. I don’t want to put anyone on the spot, but I do feel that we in the rare disease community should help each other – if you cannot physically do the challenge or donate, I just ask that you go to alsa.org and educate yourself about ALS and share about it on Facebook or twitter or your blog or somewhere. Just as everyone of us would love to have awareness raised for EDS, we should all stick together and help others in the rare disease community.

 

Apocalyptic Anxiety

mayan calendar

If you have not been under a rock, you are probably well aware of the pending end of the world, brought to us by the brilliant Mayans (who somehow could predict the precise end of the world several thousand years in advance but somehow missed predicting the demise of their own culture) and their now legendary calendar. Yup, the world is going to end on the 21st.

Now, when you live with constant, persisting, nagging anxiety, as so many with EDS do, all of this talk of the world ending does not help your state of mind. My child has plenty of anxiety without worrying about an imminent apocalypse but, it is really hard to avoid hearing about it – it is everywhere. And, for us, there is a bit of irony involved that is very personal and requires a special humorous approach, so that my anxious child doesn’t take the doomsday predictions too seriously…

The world is going to end on the 21st… Em’s 14th birthday is on the 22nd. So, I keep telling her that I am going to wait to make sure we survive the 21st before springing for any birthday presents. If we are all still alive, I will dash out the morning of the 22nd and grab presents, wrapping paper and a cake.  No point in bothering before…

She finds this slightly less funny than I do – I think it gets funnier with every repetition. However, I am waiting for her to figure out that she could milk the possibility (albiet very slim possibility) of the world ending before her birthday to demand her presents a couple days early. After all, it would be a crying shame if she missed out on presents if the world ends…

That hasn’t happened yet, but she has decided to join in the joke with her cake. Instead of “Happy Birthday Emily” she wants her cake to say “We are all still alive”, with a Mayan theme.

That’s my girl. 🙂

The answer was right in front of us all the time. Hopefully.

Funny story.

Wait – a little background first:

I think I have mentioned that Em has struggled with her vision for quite a while. At first, I just chalked it up to normal EDS stuff and really didn’t know how much it impacted her. But it seemed to really cause her more issues as time went on. I was convinced that she had accomodation issues but didn’t know where to go from there. Thanks to Stephanie, at Everyday Chaos, I was introduced to the term convergence insufficiency and absolutely knew that was what Em had and that it could be treated. I just had to make it happen, somehow.  Then the opthamologist we saw was an idiot and totally blew off my concerns and then Em’s appendix decided to go postal, leading to emergency surgery that led to months of recuperation and other serious concerns. Bottom line, the vision issues haven’t gone away, they just got put on the back burner for awhile.

Now… funny story…

Yesterday, while we were having Em’s wheelchair assessment, I couldn’t help but notice the vision therapy equipment sitting around the room, which I recognized from my research into convergence insufficiency. I tried to keep my mind on the wheelchair discussion, but was asking myself – do they really do vision therapy here? As I mentioned in the previous post, this is a building I have spent considerable time in – as the wife of an employee and as the mother of a patient. I thought I knew about the services offered and SURELY my husband, as an employee who has worked there for 16 years, would have known if vision therapy was available through Reid Rehab. Right?

So, as we concluded the appointment, I asked the question that had been on the tip of my tongue the whole time. ‘Do ya’ll do vision therapy here?’ Rick said, yes they do and any doctor can refer us. Then the million dollar question flew out of my mouth – ‘Does Andrew know this?’ Poor Rick, as Em said, he got a deer-in-headlights look that I interpreted to mean he knew Andrew was going to be in trouble if he said yes. Although, in retrospect, it is entirely possible that it actually simply meant he thought I was nuts.

Anyway, turns out Andrew really didn’t know about the vision therapy or that there is an optometrist who does free screenings once a month. (In his defense, Andrew is not a pediatric therapist and works primarily with the geriatric population.) So, the answer to Em’s vision problems literally might  have been right in front of us this whole time. Andrew is going to run down info about how to get her screened and see what we need to do about getting her vision therapy.

Ironic that a 30 minute wheelchair assessment could solve both her mobility issues AND her vision issues. Reid Rehab really is very efficient!

 

For your reading pleasure…

I have been incredibly busy and haven’t really had time to think, let alone post anything on here. I have lots of plans but no time at the moment! Things should settle down soon and I will get back to posting asap.

In the meantime, I would like to invite you to take a little jaunt over to a cute little blog my daughter has started: Jailbirdcat.  It is  from the perspective of her cat, Padme, and is pretty darn cute, if I may say so. (Yes, this is the very same Padme that I posted about when she  miraculously returned when we thought we had lost her forever after she disappeared this winter. She is now the star of her own blog and enjoying every minute of it.)  I should probably also mention that my daughter has enjoyed the Red Pyramid stories by Rick Riordin and tends to think our cat is directly descended from the cats that the Ancient Egyptians worshiped. While there is no actual proof of that, it is true that I am frequently tempted to mummify this particular animal so maybe there is something to itl. But, I digress.

Jailbirdcat has nothing whatsoever to do with EDS but, if you have a funny bone and appreciate how imperious cats can be, you just may get a laugh out of it! And who can’t use a good laugh?

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