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.
Showing posts with label hospitalizations. Show all posts
Showing posts with label hospitalizations. Show all posts

Wednesday, December 18, 2013

Beauty Basics for the Hospital and....


A long ago Christmas with the kids trying to get our cat, Misty, to pose as well. 


Between spending hours last night getting ornaments on the Christmas tree and a scheduled appointment tomorrow with my gastroenterologist, I'm not sure I'll be able to write a Friday Tidbits this week.  To make sure something gets done, I'm writing today.  I really need to get strong enough to start posting more often, but those of you who keep reading this blog, no matter how little sense I all too often make, know how many ER visits (6!) and hospitalizations I've had in the last few months.

So, today a bit of this and that, mostly my thoughts on ...


  • There's been a lot in the news about the FDA requesting the manufacturers of antibacterial soap to show that the claims they make are indeed true.  I was pretty happy to see this.  I use only Dove "beauty bar" (soap!) except for one exception: the Dial antibacterial pump I consider a "must" for underarms and surrounding area. For me, nothing works without that first step.  If I forget it, the two different deodorants I use at the same time simply don't work.  And it makes sense. The "foul" smell is from bacteria. With all the sweating "we" do, bacteria multiplies awfully fast! 
  • I always carry Dove in my emergency bag for possible hospitalization when running to the ER but I've now decided to add the pump Dial antibacterial soap as well.  The antibacterial soap in the hospital is just too harsh for my sensitive CFIDS/ME/CFS and fibromyalgia skin.
  • I've also added air freshener and a scent (perfume) that puts me in a good mood and allows my doctors to come much closer to me and my bed.  The air freshener is for everyone's survival, especially if a digestive disorder is lurking.
  • My sensitive skin can't handle the washcloths in the hospital so I bring a couple of my own, in a distinctive color - this so they don't accidentally get thrown into the hospital's laundry. Purple is one favorite.  Another is a washcloth that was brown but somehow came in contact with bleach. No one wants it and that poor washcloth has finally found a new purpose for its "life." ;)  Don't we all want to be useful? 
  • Ear plugs are definitely in my emergency bag.  The noise on the floor was so crazy that I couldn't even hear the TV - and the speakers were on the inside of my bed. 
  • Hospital air is dry.  Add to that the fact that we often run fevers.  On top of that, our dry eyes can drive us crazy.  It got so bad that I had hubs bring me my Evian spray in a can.  Don't scoff!  Water in a spray bottle just doesn't cut it.  A spray of Evian misted my face and I felt much better. (Or you can go insanely decadent and get La Mer's version, bliss!)
  • When you're really sick, it's hard to motivate yourself into washing your face.  The answer: miscellar water and cotton pads. Bioderma is my absolute favorite.
  • And, a crazy thing: I brought all I need for a basic manicure!  When I started to feel a bit better, I did a very slooow and minimum manicure when I couldn't sleep at night. (Who knew there's a upside to being an insomniac?)  I'm not completely nuts: a neutral color was used.
  • Finally: If you're feeling really good and bored (as I did with my gallbladder surgery last year) you can even do a couple of DIY spa treatments!  
Some of these points have been covered in the past. (link)  

Christmas is almost here.  Ugh to the craziness and yay to the food.  I love Christmas Eve dinner because it's lenten and there are dishes we eat only on Christmas Eve.  But more on that later.

I hope everyone's trying not do too awfully much and risk a flare.  Tonight the tree was fun to do once I could haul myself out of bed after taking painkillers.  Only four ornaments broke.  I managed to cut my ankle and get blood on my new off-white living room area rug.  That's when hubs and I called it quits, leaving the rest for today or this weekend. But then I went too far.  

At 1AM, unable to sleep, I snuck downstairs and spend six hours on finishing the ornaments part and cleaning up the area.  I wanted to surprise hubs, as well as send some more "in progress" pictures to the son living in Malaysia. (OK: truth be told I was bored and antsy. I hate doing nothing!)  The top of the tree needed more work but I just didn't have it in me to fix it, thinking I might be inspired later.  I sat down to take pictures and they looked fine (other than that blasted top!). Then I wanted a picture with the lights on.  Surprise! Suddenly half the lights were not working and we had tested them so much to be sure

Oh yeah. I'm going to be in great shape for that GI appointment tomorrow! ;)

Until next time, I hope everyone is doing their best - only better!  Ciao and paka! 


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Saturday, November 30, 2013

Checking In & Updates


HELP!

A very quick "hi" since I feel I'm neglecting quite a few friends out there.  Oh good grief, I've taken my night meds so I really shouldn't be writing.  I KNOW I'll regret it in the morning.  I'll be upset and think, "your brain told you not to go there! Why did you do it?"  Well, it seemed like a good thing at the time - that'll be my answer to myself and hopefully things won't be too bad.  (Right! Huh!)

Also, I'm beginning to realize my posts don't need to be earth-shattering info all the time (took me long enough!), that I don't need to cram every thought I've had into one long reading, and furthermore, that they do not all need to have a huge purpose with life lessons thrown in.  In other words, I guess I need to loosen up.  Just one problem: I'm not a person who can loosen up, ever, much as I've always tried!  Ask my family. Ask anyone who's ever worked on me from doctors to masseuses to phlebotomists to those who know me well. It just doesn't happen.

But to catch up those who aren't on Twitter, you've sort of missed a few "adventures" of this spoonie who is really getting ticked off with the complications from ME/CFIDS/CFS and fibromyalgia.  Last we "spoke" I'd finally had "the works" done (hair, lashes, brows). Unfortunately, I had to stop by one of our local hospitals for an X-ray after our big day out in order to see what's going on with the painful and limited motion in my left shoulder. Turns out that I'd somehow managed to mess up my rotator cuff.   (See this link for more on what great things happened that day!)

I'm hoping to bring us up to date because it's another thing I can laugh about...well, sorta.  But there are a whole bunch of things I'd like to talk about so let's pretend this is a "Friday Tidbits" with bullet points.  I'm going to tease you a bit.  These bullet points will serve as a reminder of what I want to talk about this week. Yes, folks, I'm going to try mighty hard to get back to posting on a more regular and frequent basis.  I must get away from the getting sick and hospitalized thing.  Uhhhhh..... My plan - the stories behind the following:


  • Yes, ladies and gents, you may have realized why I'd gone MIA again.  It was yet another hospitalization!  
    As I laid in pain, nauseated, I have to admit that shallow me was ever so thrilled that I happened to take a bath and wash my hair before we made the ER run.  More on this later - both medical issues and "shallow" ones as well.  In fact, I did manage a very rudimentary mani while in the hospital.  More on this later. Standards must be kept!
  • MY new theories about what's going on.  Well, perhaps not what is going on, but a possibility of why it's going on....
  • And how could we have Thanksgiving without my addressing food?  There's a lot here.  Also, if I can get my act together I'd also like to occasionally give you a few recipes or food ideas which keep me going.  I don't know about you, but I can never decide what I want to eat, if I should eat and so forth. So, recipes and ideas, might be coming down the pike.
  • I've a few more ideas for what to add to your prepared hospital (or travel) bag.  I realized I needed these additions the hard way.  
  • What have I been reading?  Not much, mind you, but I'm enjoying what I've discovered.
  • I can't believe I'm going to say this but...for the first time since I was a elementary school girl, I'm going to make a few real thought-out New Year resolutions. (I can't wait to see the backside of 2013!)  Instead of just grabbing the first couple of ideas that pop into my head at the last minute, I'm going to give this some real thought.  I think I have one badly needed resolution figured out which will help others.  We can even egg each other on support each other with this.
  • Making a list of what makes me happy and puts me in a good mood - and why I need this list.  (It's a must!)
  • Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)
  • Why I need to work hard on making changes which will put me in a mood light enough to really have no problems saying things which I'm grateful for at next year's Thanksgiving table.  I know.  I hate to sound ungrateful but I'm putting this in at the moment because I know that there are too many of us out there who have problems coping with the holidays - and I wouldn't want anyone to think that they're alone in the not greatest of mood mode!  (Experience here!)

These are just a few of the topics I hope to discuss in the next few days/weeks.  Some have to do with the hospitalizations (the one this week and the one just prior) and the bit of brainwashing that goes on.  Or as I like to call it, "propaganda." 

I'm praying that my health allows me to follow through with that which I want to do. Following through and staying busy in general: now THAT always puts me in the best of moods! 

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


(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)