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.

Friday, October 12, 2012

Friday Tidbits: 10 Beauty and Hospitalization Tips

Considering that I'm in the hospital today and, at the very least, tomorrow as well, I thought I'd address a few hospital tips for those with CFIDS/ME/CFS and fibromyalgia, for a more "successful" stay.   Yes, I'm trying awfully hard to get this "Friday Tidbits" going and on schedule to boot!  Ah, what dedication!  (Ah, what boredom and a bit of nerves as well, I freely admit!)

1. Bringing earplugs with you can be heaven-sent if you are sensitive to sound.  I finally found a brand and type I love, Mack's "Dreamgirl Soft Foam Earplugs" (available at drugstore.com).  Normally, I feel earplugs are too uncomfortable to bother with, but these are really unbelievably comfy.

2. Eye masks are great for light sensitivity since it's never really dark in a hospital. I found a pretty generic type and for the first time ever, I'm not only able to tolerate it, but actually enjoy wearing one, even at home when I happen to finally fall asleep during the day. This is truly amazing since I hate most things on my face. I bought the "Body Benefits Satin Sleep Eye Mask," at drugstore.com.

3.  In my down time, to deflect from not sleeping and to try to ignore the pain, as well as the dreaded surgery to come (let's get it over with NOW is my feeling!) I've started in on my DIY facials, much like the long-haul flight treatments I discussed when flying out to Malaysia. I'm doing a good cleansing - hitting those pores and hyperpigmentation with everything I have! - along with exfoliation, treatment masks, serums, and other treatments like SkinCeuticals CE Ferulic Acid (see this link for my reviews here and here ) with moisturizer or Liquid Gold without moisturizer.  I'm indulging in the Sisley Express Flower Gel Mask, as well as my personal Hall of Famer, Elemis' "Papaya Enzyme Peel Mask" - not all at the same time, of course!  In other words, as I wait, I'm doing "the works" and enjoying "being a girl."   Who knew a hospital could be used as a spa???

Of course, I'm sure that later today, post-op, DYI's will be the last thing on my mind but as I stayed up all night with my usual insomnia and my out-the-wazoo pain, I'm trying to have some fun and trying to keep my patience to whatever maximum I'm capable of, which is, and always has been, almost zilch!  I've already experimented with one round of makeup and may be up for a second round if I get too bored and can summon the energy to go there again.  Actually, I'll try just about anything to make the waiting time go by faster!  And with the micellar water, it'll take just seconds to get any cosmetics off for the surgery once a slot becomes available.  (Yes, I'm shallow, but sooo easily pleased!)

4. I'm happy with myself and annoyed with myself, both.  I'm happy in that I managed to put quite a few mini-sized products into a "travel bag" but was more or less haphazard about it, knowing there'd be no real chance of a vacation any time soon.  I hadn't anticipated hospitalizations, however.  (Where IS that so-called brain of mine?)  So, after I was settled in my room, hubby made a mad dash home with an extensive list and had to scour cabinets and drawers for certain products and clothing, electronic devices, chargers.  You'd think I'm in here for, at the very least, a two-week stay!  Thankfully, he didn't need to start from scratch, but it was still quite a scavenger hunt.  The real basics were there, however, in one place, so, hallelujah!

5. I love flip flops for hospitals.  They are easy for "on and off" and afford more skid-free walking than slippers or those socks with "grips" on them.  But don't go for the real cheapo kind which are harder to walk in and cause any number of problems, such as blisters.

6. Try bringing a notebook: they're great for all sorts of things!  For example, I like to keep track of my vitals, even how I'm feeling. I should, actually, list symptoms but that's just so beyond me at the moment. Back to my "vitals," I came in on Thursday with a BP of 90/45 but am now, on Friday very early morning, at an unheard of - for me - 145/90 and 142/98, due to the pain factor.  If I hadn't written these numbers down, I'd question my memory, and rightfully so, because of fibro-brain.  I also make lists of questions for doctors and nurses, which meds I'm given and when - ESPECIALLY my pain meds - and who my nurses are/were because inevitably someone will ask me, somewhere at sometime about something saying, "well, who told you THAT?" and I have no clue.

7. I like to bring a bunch of my own washcloths and hand towels, and in colors other than white.  The washcloths and towels that hospitals carry abrade the skin all too easily, or bring on rashes and even hives.  So, I bring my own and in order to not lose them, in a color as far from white as possible.  I use a hand towel to dry my body since do you REALLY need a bath towel?

8. I'm loving those sponges on a stick which are used to moisten your mouth and lips - no water allowed, now going on well over 48 hours so far, and ice chips monitored closer than any restaurant chef with his precious truffles!  I think I'll try to get those for home use as well since the various lip balms I have are simply not enough.  Perhaps these little sponges can work synergistically with lip balms?  One can only hope!

9. Micellar Water, especially my beloved Bioderma, is a life-saver if you can't get out of bed for a good facial cleanse. I wash off the Bioderma with a damp washcloth and then put on a serum followed by a treatment (anti-aging or hyperpigmentation, for example), followed by a good moisturizer.

10. Since the air is so dry, I'm also using a "water-in-a-can" such as Evian or Avene. Its fine mist helps a bit with the very dry eyes I have going from so many pain meds, so every little trick helps!

So, there you have it!  I'm not sure when I'll be back since so much depends on how the surgery and recovery goes, fibro-brain the biggest concern, of course! Hopefully, I won't have too much down time - I wouldn't want you to miss me too much! (Joke!)

Wishing all a super weekend with everyone feeling their absolute best, only better. Caio and paka!


  1. Well, holy crud, when you get sick, you go ALL the way. I obviously hope you feel MUCH better soon. Your tips for hospital stays are great, especially the notebook. You have to be your own advocate (although a family member as advocate is also very good).

    I probably missed it in the reading but, do you have a surgery time yet?

    1. Hi Irene! I'm sorry your in the hospital. I hope it's a quick stay. Let us know when your surgery is scheduled so that we can pray for you, my friend. Blessings Always, Lyev

    2. Thanks so much for your support (as usual, camp друг!). It's indeed a quick stay as the plan is a noon dismissal if all goes well with blood work, etc. Home sweet home! Appreciate your prayers, Лева, as usual! Ира xx

  2. Oh "Labyorkie," you had me in stitches with that first line, "ALL the way"! And you made my day by letting me know that you found some of my tips helpful. Yippee! The surgery was done on Friday afternoon and the pain was so bad that it woke me up in the recovery room, whereas in past surgeries they've always had to wake ME up. But pain management was great and gladly given, a huge relief from the way hospitals usually work. 100 % agreement on the "patient advocacy" front, which I think I may have posted about somewhere.
    However, there were a few snags I'll post about, in the "outrageous" category.
    Thanks so much for your well wishes. I really have been so incredibly touched by how many people have been supportive, via Facebook, emails, etc. Truly amazing and such a support. Hope you're doing better?!? xx

  3. I'm happy you're sprung from there. I woke up from my gallbladder surgery on my own as well - INTENSE pain, nausea, and the stupid blood pressure cuff that closes and opens on its own. It was horrendous. I had my surgery the day of a snowstorm that shut parts of Route 9 so we took back roads home, hitting bumps and everything else. LOVELY when you've had multiple abdominal incisions through muscle.

    Anywho, I hope you continue to feel better. I'm still feeling 'punchy' - as in, I'd like someone to volunteer to be punched. ; )

    1. You with the gall bladder too, Labyorke? Can you believe the pain? I mean, my labors were easier and I had 10 lb babies w/ everything that could possibly go wrong did so! How was the recovery? The surgeon was really sweet, remembers my kids, etc. But wow! When he gave me the orders, he was just absolutely scary. Very organized with pages of instructions that every surgeon should give out since how much do you really retain when given instructions? These are not those mass produced hospital instructions that basically tell you nothing. He was dead serious about calling him in middle of the night if anything remotely suspicious arises.
      Punchy... Great. ;) I need to respond to the serotonin thing but want to think about what I want to say so give me a day or so to organize my thoughts. My brain is just so fried at the moment. Really, really, really want you to get better and I'm putting on my thinking cap. Something is right on the tip of my tongue and driving me batty while I try to let go in order to remember it. Hope for good day tomorrow?! xx

  4. I had 'reflux' for 5 years, saw a gastroenterologist the entire time. He had me on 2x the normal dose of Prilosec that whole time. Mind you, he knew my family history - my father and 3 of my 4 grandparents had their gallbladders removed. The fact that the 'reflux' got worse from fatty/greasy food rather than acidic food should've also been a massive clue.

    Jump ahead 5 years and I wind up in the ER for 12+ hours in PAIN. Was put on Demerol, which delayed the pain and made me exceedingly stupid. Finally fought to be signed out when the idiot gastro on call decided it couldn't be my gallbladder because I didn't have stones. Apparently gastro idiot #2 hadn't heard of gallbladder disease.

    Anyway, a surgeon (long, medically improper/unethical story as to how he came into the picture - should've sued, lawyers later on said I had a perfect case but, waited too long) ordered a Gallbladder radionuclide scan and found out that my gallbladder was operating at only 40%. When the organ was removed, he noted that the walls were thickened from repeat and acute attacks. Within 48hrs of removal, I was off Prilosec and the gallbladder pain was gone.

    Here's the IMPORTANT warning - DO NOT PICK ANYTHING UP...DO NOT DO ANY HOUSEWORK. Seriously, you probably had laparoscopic surgery so you have multiple incisions. These muscles are the muscles you need for EVERYTHING. You can tear your stitches and potentially cause worse internal scaring. Also, don't push your luck with your diet. And make sure you eat enough fiber if you're taking a narcotic for post-surgical pain. If you get a fever, even low-grade - call the surgeon ASAP.

    I'm still prone to issues with fat. Through trial and error, I wound up on a very low fat diet (so much so that my nutritionist forced me to increase my intake). I'll bloat like a magic pregnancy, get violently nauseated, have the right-side abdominal and back pain, etc. It happens MUCH less than pre-gallbladder but it happens. It's post-cholecystectomy syndrome. Considering the suffering both before and after my surgeries (I had incisional hernia repair 18mo later), it's kind of a kick in the crotch to still have gallbladder problems and no gallbladder of which to speak.

    Regarding Fibro - I feel bad bitching because I know what you're going through. I have to ask though; do you get what I refer to as 'Fibro Flu'? It feels EXACTLY like the flu but, it's not contagious and isn't viral? I get it every single year at this time and it lingers for weeks and weeks. I get my flu shot each year and only had the flu twice in my life (6th grade and freshman year of college) but, the memories are very vivid and match these symptoms to a 'T'. Friends and family who've had the flu are empathetic - to a point. But, as is usually the case with Fibromyalgia, they don't really get it. I'm sure they think I'm being overly dramatic. If one more person tells me to try to get out of the house, I'll have to write it on a list to remind myself to yell at them when I have the energy next year. : )

    I hate being THIS wiped out. But, it's also the low-grade fever, chills, full body aches, needle-feeling in my skin, sore throat, swollen glands, nausea, etc. It goes beyond the 'normal' Fibro symptoms to be pseudo-flu.

    I'm supposed to meet my friend tomorrow. I haven't seen her since 2009. My stomach is iffy (Fibro-flu) but, I will be very mad at myself if I can't see her. I hate how Fibro isolates me from most people, especially my friends. It's difficult to make plans when you won't know how you'll feel in an hour, let alone a week, when it's a massive chore to get ready, to drive, etc.

    I hope you have a very easy recovery, you deserve it. I'll let you know if I actually make contact with the outside world tomorrow. : )

    1. How did the visit with your friend go, Labyorkie? I really hope you got to go out!!!

      Regarding the feeling of fibro? Every single day is like having the flu. I had it back in 1975 and a few other times and it was hard to figure out that is WAS the flu since it just felt like every other day. But, no, I've only had a "remission" once in my life since all this nastiness started. I have fevers every day, chills, full body aches (what my neuro describes as "body migraines" and are just that: body migraines, etc. I've never understood the fibro pseudo flu, other than the part of it being non-contagious. It's a constant reactivation of the initial flu that caused this road to you-know-where! I don't get the flu shot any longer since it just makes things worse, with me going into life-threatening pneumonia.

      And yes, I think that the way we are unpredictable to be the worst thing, despite how awful I feel physically. I always feel as if I'm a liar or that I'm a person who can't be counted on, two huge bugaboos of mine. Today I had to cancel an appointment with my GP, an appointment my surgeon ok'd in case I felt well enough to go see him. Unfortunately that wasn't to happen. I need my driver's license renewed by the end of the month and don't know when that'll happen. I don't drive, but being without a license will make me feel like I'm really and truly not a part of society. Ugh. I do so hate all things with these illnesses! xx

  5. Fab post Irene, hope you are well and that your stay in hospital was pleasent. I know that hospitals in America must be different to ones in the UK seeing as you dont have the NHS. I'd be interested to find out what your experience was like. Thinking of you xxxxx

    1. Thanks ever so much, Chloe! I was really lucky to get into a local hospital that's pretty advanced for a relatively small town. Hope today's post helps answer some of your questions - let me know if there's something specific and I'll try my best to answer. Thanks for all the tweets: it helped so much to know you were out there! xxxx