About Me

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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.

Sunday, August 4, 2013

Sunday and Its Sundries

Bell's: don't even think about settling in!  OMG! Do I always look this cruddy?  At the end of a day when our daughter was yet again taken by ambulance to the "major med center" hours away, all while hubs was getting emergency surgery locally, his first hospital anything ever!  Do I look like I'm in a mood to take anything else on...or worse, to suffer fools gladly? 

When I started "Friday Tidbits," this is the sort of post I had in mind: to just report on this and that, once a week, about the little things that can make our lives a bit easier to navigate.  Or: to catch up with random thoughts that I always manage to come up with. (I can hear that collective sigh - y'all know that, right?)  Or just to vent and shed the occasional tear.

Instead, Friday Tidbits has seemingly turned into simply a deadline I've forced upon myself. But today we'll have a Friday Tidbits in spirit, although it's a Sunday. And BTW: there IS a Friday Tidbits that was written on a Sunday. (Is anyone able to follow that?) Are there any sharpshooters out there who picked up on them when that happened?  Should I give clues? There are a couple of other doozies I managed to sneak in, which I didn't catch until many months later when it seemed right to leave them as they were - as proof of my fibro-brain. If I had any sort of extra strength, I'd turn the hunt for these - shall we say "anomalies" - into a contest with a prize.  Unfortunately, my brain is too fried to go there.  However, if you do find what I'm talking about, please feel free to leave your finding(s) in the comments.  Now what other blogger has scavenger hunts, albeit the CFIDS/CFS/ME and fibromyalgia sort?

On with my random thoughts and "things."

  • At the risk of jinxing myself, I think I may have been handed a huge pass. The Bell's Palsy, which I wrote about in Friday's Tidbits, appears to be minimal .  Yes, my face is crooked, swollen on one side, leaking tears (quite the pretty picture I'm drawing here) with drooping eye, sagging cheek and an extra jowly jowl (singular), but that appears to be it for the moment.  Pain is manageable (again, a knock on wood!).  Oh my! If things could just stay this way, not get much worse, and not take an inordinate period of time going away, plus not getting to be too much worse - and not become a permanent thing - I'll be a mighty happy camper. (Wow! That's a lot of conditions! But then I do like my face to be somewhat symmetrical, Diva that I most obviously am! ;))
  • Onward!  How I wish I'd had my "ring toe" "buddy taped" when it first got stoved (and possibly broken) three weeks ago. What a difference a piece of tape makes! Considering how much "we" seem to walk into doors and windows (as I gathered from my twitter friends after they read this post) this bit of "trivia" is probably a good tip to keep in mind! 

My final "thing" is a bit lengthy.  Sorry.  But I've been meaning to write about this for quite some time now.  (I don't think I wrote about it but who really knows?)
  • I never realized that I was "allergic" to the sort of tape hospitals use.  When I had that nasty central line taken out while still in the ICU (gag! and sorry for THAT visual!) the doctor placed a gauze over the open "wounds" to protect the area where the stitches had come out.  Well, the scars from the tape used to keep that gauze on left a rather nasty bit of scars - and I had the tape on for less than 24 hours!  Even new nurses coming on duty would notice the ugliness there - get a bit grossed out - and insisted on covering the mess with whatever "healing balms" they had on hand. (Thank you, nurses!) Two plus months later, my neck is still scarred (like a promiscuous teenager's!) and recently it hasn't improved much more than what it had in the first couple of weeks. I've tried seemingly everything I have in my arsenal and no luck!  I suppose that adding fuel to the fire, the tape was put on the very sensitive neck/throat area where it doesn't take much to mess things up.
  • So, if you have even the slightest sensitive skin, ask the hospital staff to use "paper tape," or "silk tape."  Every hospital has it but since it's a bit more expensive than the regular tape, staff usually won't use it unless requested - or you find yourself with a young doc in the ER who does care how your neck looks for the rest of your life - even when you're an old bag such as me!  In economizing, the hospitals have become "penny wise but dollar foolish."  But don't even get me started on that! Example: two of the almost three weeks I spent in the hospital were freezing, so much so that the staff wore coats and jackets when away from their stations and kept them on until a supervisor of some sort would give them a nasty look which would say, "do you realize how unprofessional you look?"
      And finally, may I say how much I'm loving the summer TV shows?  But I suppose that's another post.  At this point I can only say, "Thank goodness for cable" and OnDemand!  Now if I could only figure out how NetFlex works, as well as downloading movies onto my iPad, I'd be an ecstatic camper!

      As always, I hope everyone's doing their very best - only better!  Ciao and paka.

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      1. I developed a sensitivity to latex whick I discovered after tape holding down those sensors to make sure you're alive during surgery was removed and I had welts where the tape was. It's now in my charts at each doctor's office. I wonder if the sensitivity is a Fibro thing or because I went through a lot of medical things and was exposed A LOT of latex (thereby developing the sensitivity through all that contact). I hope this makes sense. I don't have my other migraine symptoms but, my brain is a tad bit [more] addled.

        When things are overwhelming, my best friend says 'stop the ride, I want off for a while'. I use that saying too. It sounds like you could use a time out as well. As always, I hope things improve and you get some peace!

        1. Yes, Melissa, these allergies and sensitivities can and do often occur with repetitive exposure. Fun! (not!)

          Yeah, I think I'm about due for a "stop the ride." As are YOU!

          Thanks for the support, M. So appreciate it. (See ya later on FB) xx