About Me

My photo
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.

Tuesday, March 27, 2012

My Hair and Beauty Outings...

Don't we all want to come home from the hair salon looking like we did in our 20's?

On Saturday, I will hopefully have an appointment for my hair with a few other goodies thrown in. I've now gone at the very least eight months since my last hair appointment and I'm looking especially pathetic and old, gray and dull, not to mention "holy," which will become clear in a moment. I'm always worried about the whole process because of three reasons.

First: This visit has me particularly uneasy because I've been so sick that we've lost count as to how many appointments have had to be cancelled at the last minute.  I feel like a second-class citizen when I walk in after so many cancelled appointments.... I just hate being so unreliable. Really hate it.

Secondly, I must admit that I do have a real love/hate relationship with going in for my beauty adventure.  I always say, with no sarcasm or exaggeration at all, that I'd rather have a root canal done than go in for a hair appointment.  You see, my hair is very fine and thin...and getting thinner every day, unlike my body (groan).  About 15 years ago, I finally found a miracle worker in Pittsburgh, an hour drive well worth the "health cost."  I'm trying to figure out how my talented and imaginative Diana will attempt the latest challenge - a four-inch bald spot that resulted from the incident I had with my arm/hand back in November. She was already working around two other bald spots but they were just babies compared to what I've got going now.  I've been using men's Rogaine foam (I know it says that it's not to be used for women but I did some research and it looked kosher for my needs) plus Phyto vitamins for hair, something that's helped me in the past.

However, I am arming myself with pictures of when I discovered that crater, six WEEKS AFTER coming home from the hospital.  Did no one think to mention that I had this huge white scalp showing in the back of my head? Did they honestly think that I wouldn't notice it eventually??? Plus, because of that tiny problem of my almost dying a few times during that hospital thing, my hair in general had started falling out.  Anyway, I'll have those pictures for the moment Diana sees that huge hole in the back of my head and mentally throws up her hands and finally admits defeat. Poor woman needs some hope that this latest bald spot at least has a chance of growing back in. Should be interesting.

But going in for my beauty adventure is always an experience I dislike/hate for many reasons despite the fact that the women (and men) who work there are wonderful.  I love them all.  They are kind, not noticing how ill I am without appearing callous, yet never condescending nor unconcerned, yet at the same time appearing not to notice my cane. Hard act to do well!  Of course, I don't know what goes on behind my back, but  I do love two women there especially, Diana, the aforementioned hair genius, and my newest discovery, Lan, who does a beautiful job of dying what I have left of my brows and lashes so that they can be seen.  I must admit, however, that I'm so looking forward to Lan noticing the bit of growth in my brows from the hair growth products I've been using as religiously as a person with severe CFIDS/ME/Fibro can, and will be crushed, I know, if she doesn't see a difference.

BTW:  Having discovered dying of lashes and brows has really made my life a WHOLE lot easier - it eases and lifts my "self" beyond explanation.  Hubby, who takes me there and then runs errands for me between checks as to how I'm doing, doesn't understand why all this makes me feel so much better.  However, he can SEE what it does for my spirit and thus loves the whole adventure - certainly more than I do - and actually gets excited about it all, despite my acting like a grinch the whole way there.  Did I mention that irritating hubby is also the sweetest, albeit delusional, hubby ever?

Back to Lan: at least after she's done with me I have an idea as to where to go to fill in those brows with brow powder and can find my lashes to put mascara on...otherwise all is invisible or non-existent.  And since my eyes are so dry, I can actually get away without the mascara if need be and not scare any children who may cross my path.

Finally, going to the beauty farm is not an easy deal:

First, I have to feel well enough to get out of bed, bathe, put on some makeup, see how awful my hair is and SORT of fix it and then find something (other than a nightgown) to wear which fits my ever-changing body. This is major league for me.  By the time all this is done, because of the sweating, trembling, shaking, almost-passing-out factor, you can imagine me employing the "up, rest; up, rest; up, rest" method forced on me by my cruddy body.  This takes at least two to three hours to get through.  Come on CFIDS'ers, CFS/ME'er's and Fibro's, admit how hard it is to start your life each day, but especially when going out of the house!  And though we all have many of the same problems, we all manage to have different problems also, and so in the end, it's never an easy task.

Furthermore, there's that funny little annoying problem I have with sleep - the BANE of my existence.  My life has no pattern nor any predictability or reliability at all because of the sleep factor.  I never know WHEN I'll fall asleep, IF I'll fall asleep at all, for how long WILL I sleep?  And if I do happen to fall asleep, will it be an hour before I have to get woken up for the "get ready to go routine"?  Am I going to be "sick" that day, as in I'm so sick that I can't stop falling or there are huge ulcers in my mouth or any number of conditions that keep me a hermit?  I absolutely hate it when hubby sees me in the morning and the truth hits me as I see a certain expression on his face: I will not be able to go under any circumstances, I'm just doing that badly that day...no adrenaline will help, no painkillers. After so many years, he, as well as my kids, can read the signs, among them the blue or no-color lips.

People always say to CFIDS'ers, "but you don't look sick!"  We absolutely, positively and indubitably cannot stand those words.  We're sensitive about people believing us, so we all too often feel those words undermine our illness.  Furthermore, it IS an insult because we know that we happen to look like something you stepped into by accident in a cow pasture. We look horrid despite the makeup...often worse than at home without makeup, because we usually look like a marathon runner does at the end of a 25K race - not only are we all sweaty and clammy, but our hair is absolutely wet, precisely because it IS the equivalent of a 25K run for "us."  For you non-jocks out there, imagine how you'd feel after a marathon.  At the finish line line you'd be breathing hard, sweating, legs feeling like jell-o, nauseated and so forth.  That's just a bit of how I feel before I reach the front door to go out.  Now that I think about it, perhaps it's a good thing that we have an hour drive to the salon: it gives my body a chance to rest before the fun really begins!

And finally, you've spent the week before doing absolutely nothing, trying to built up what I call "health credits."  If you don't put away those books lying around your room, you get x amount of health credits.  If you stay away from the garden, if you refrain from taking a bath, washing your hair or your face but so many times in the week before (never in the week before, if I'm being honest about it), you earn another unknown amount of health credits. You're constantly thinking about those darn health credits - or being reminded of them by a family member should you forget - in everything you do.  Normally, I rarely go downstairs to the kitchen, living room, etc., areas, but the week before a doctor's appointment or a beauty adventure, I absolutely NEVER go down there.  I need to save up those health credits.

I'm excited but scared....each and every time.

So, until Saturday, I'm living on tethers, hoping against hope that this week I WILL make it to my hair and beauty appointments.  I'm eating as healthy as I can, trying not to allow anything upset me (ha!), focusing on the positives (sorry, but another ha!), saving up as many health credits as I can and using any other of the other weapons in my arsenal of getting out of the house for the day.

Hopefully, the team can make me look Bea-U-ti-ful! ;)


  1. Hi Ura! I hope that your visit to the salon is a hair-raising experience!

    1. Oh, Leo, I'm very sure it will be...if I can get there. I'll let you know for sure! Thanks!

  2. That day, the Saturday, is tomorrow, right? Did you save enough health credits to be there and have real fun? I cannot wait to hear about your upcoming adventure.
    Regarding laughter: some time I really want to cry when I realize how much effort you have to put in a simple task.
    God bless you!

    1. Yes! Yes! Yes! I finally made it! I'm paying for it now, but it feels wonderful being a girl again. Will write more as soon as my brain and body cooperate. Thanks for asking, Mariula!