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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, October 26, 2012

Friday Tidbits: ER tips

Oh yes!  Today is Friday, the day of the week when it seems that IF we're going to get sick, it'll most definitely be after 3pm (though, unfortunately, usually at 5pm), just as doctor's offices are closing for the weekend.  Tell me you haven't experienced this at least 10 times in your life, especially if you're a mom with a gang of kids who bring home all but the seven plagues of Egypt into your home.  Huh?  I thought so...!   And having CFIDS/ME/CFS and fibro or any chronic illness seems to bring us to the ER all too often.

Given that last night it was my (adult) daughter's turn to grace our local ER with her presence (she works with kids so she too brings home all sorts of fun germs and viruses) - though not on a Friday night, thankfully - I thought I'd list a few "helpful hints" about ER visits in general.  I swear, these last few years our family alone seems to be keeping the medical industry in our area in business single-handedly, with little exaggeration.  I'd love to relinquish THAT title!   Really and truly, contrary to all indications, we're normally a "disgustingly" healthy family, with the one notable exception being me. I've taken to trying to remember if I'd accidentally broken any mirrors in the last few years and one does come to mind but surely it's been seven years by now!  Oh well.  It is what it is.

And so onwards with my ER tidbits:

  • If you live in an area where you have more than one ER, I think it's preferable to go to one consistently, if at all possible.  At the risk of making our family sound weirder than ever, there really is a certain feeling of "comfort" and "coming home" when you go through those doors and the hospital personnel recognizes you. Suddenly you're a person and not a statistic or a number, an important distinction if you're a "legitimate" patient who has serious problems which are already recognized by the staff.  
  • If you go often enough, a box of chocolate or some flowers sent to the department at a later date goes a long way in the treatment in coming months (or days) because staff remember and are touched.  After all, who ever thinks to remember the ER personnel, and yet there they are, working to save our lives, often under the most disgusting conditions.  A token gift just shows them that the staff is not simply numbers but people too.
  • It's not always possible to go to the same hospital ER because your doctor may decide to admit in only one hospital, but make sure you know which hospital(s) all of your doctors admit their patients and go from there.  I always feel knowledge is power and every hospital has it's own idiosyncrasies and rules.  (If you're a reader, I recommend The Man Who Couldn't Eat by Jon Reiner, and the screw-up with his Crohn's Disease that was messed up because of...well, read the book.  It's surprisingly funny and if you're into food or NYC, you'll especially love it!  It's also available at Amazon at a bargain price.)
  • Try to be distinctive in some way, but in a very nice way!  Being recognized by ER staff (ie, making you a human and not a number) can also extend to something silly, though memorable, like silly socks or funny undies; girls, think cute boxers (thongs are a dime a dozen, I'm afraid, and sort of a turn-off, giving off the wrong vibe - you're going to an ER, not a "gentleman's club"!)  My daughter loves to buy wild Betsey Johnson socks at TJ Maxx and somehow seemed to always have a pair of them on whenever she was run to the ER.  The staff learned who she was long before "her time" simply because they wanted to see the latest pair of crazy but cute socks.
  • Bring a list of the meds that you take, please!  It was a rookie mistake on my part that we forgot to bring a list during my ER run and subsequent surgery two weeks ago and then proceeded to forget to mention one of my scores of meds. Unfortunately, after surgery, I really needed that forgotten medication.   Furthermore, if you're admitted: 1) ask your attending if you'll be able to continue taking all medications; 2) ask if there is any med you should bring from home.  In my case, we didn't realize that we should have brought my own thyroid med (good to know now) but to be fair who could have realistically predicted such a rare reaction such as my hives, itchy skin and rashes suddenly appearing?  Also, the only way to get my Adult Growth Hormone is by courier from the insurance company, so that is always brought to the hospital and locked up in a refrigerated case.
  • Between one med forgotten to be mentioned and a second checked off the list by my doctor AND NOT BEING INFORMED ABOUT THE CHANGE BY HIM makes me feel that next time I'm in the hospital I may ask for someone else who may cover my regular GP.  However, when I next see my GP, I am most definitely going to discuss this with him.  I like to be included in my care if I'm conscious - just a bit of a quirk with me, I suppose!  I should also not be so "uncomfortable" in the hospital (understatement) that I end up begging my attending to allow me to go home with the result being that I ended up being rushed back to the ER by ambulance within less than 24 hrs, dying and on the "iffy" list for a week with my surgery last year.
  • Point: you must have good communication with your doctor - sort of like with Dr. He's-A-Hunk!, who sat on my bed, invaded my space and looked me in the eyes while explaining everything to the nth degree.
  • If you do have a Doctor Hunk, or are worried that you may not remember things told you, ask your doctor if you can tape the important points of conversation or have a friend or family member with you who can help out as your patient advocate.  Some might mind being recorded, but others might not.  I think it wouldn't hurt to try to ask if you add that a patient retains only 10% of any conversation.  Heck, I know some doctors who would consider being recorded as the proof of what their Mothers always told or treated them as - that they were indeed the "Second Coming," if not the "Original."  Actually, I'd probably run in the opposite direction if I saw that attitude!
  • And as with all things, trust your instincts!  If you think something is off, question it or ask for someone else to see you.  Talk to the charge nurse or whoever is in a position of responsibility for the ER running smoothly.  This is something I never for a moment considered doing, being so sure the system is correct and was shocked when I heard my daughter doing so - and she was so right!  Don't start a "p*ssing contest" or wait until things get too out of hand and no one will be able to unravel the mess.  On the other hand, don't complain if you don't like the color of your doctor's shirt, either.  Don't forget how difficult we are to treat.  But if the doctor starts putting you in the psychiatric or psychological wastebasket, it may be time to see if things can't be changed.  So, if things are off, when the little hairs on the back of your head stand up, THEN quietly ask for someone in charge.  And don't forget that you catch more flies with honey than you can with vinegar!  
  • One final warning, to be used sparingly.  If the ER is stalling to get you to the back rooms, you may have to do some creative thinking.  Our daughter was told to be rushed to the ER at the "major medical center" and that from there she would be taken straight to the floor that dealt with her health problems.  Because time was of the essence we were there in less than 3 hours, "flying" the entire way.  We then proceeded to wait for 4 hours to have her seen.  Attitude was horrid by all personnel, especially in an empty ER.  Later other patients arrived and left.  Nothing we said would help, including begging them to call where her doctors were waiting for her.  We should have called an ambulance to drive her to the ER but because she was in such grave danger, we felt we couldn't wait for the ambulance.  I was about to go outside and call for an ambulance, but an ambulance is not allowed to come within x-amount of space of a hospital for legal reasons (more like "agreed upon reasons," if you ask people in the know who will "talk").  So, if you have a critical condition and drive yourself to the hospital, you are doing yourself a disservice.  The wait almost killed my daughter (you should have seen the dropping of everything once they looked at my daughter and how many doctors were suddenly working on her as the word, "lawsuit," was obvious on everyone's face).  Because of this wait, it caused her to stay in the hospital an extra two weeks, making us eat the worst yet best Thanksgiving dinner around her bed, cringing at the food, yet oh so happy she was alive.  However, she then had complications for the next year which may very well have stemmed from this unforgivable delay.  

And on that note, I wish everyone a wonderful weekend with all feeling their very best, only better!  Ciao and paka!

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