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.

Wednesday, November 20, 2013

Shallow Me?

I'm not as bad as some members of my family!  My son getting a pedicure by way of fish in Southeast Asia, on holiday with his wife. 

We've been oh-so-serious here lately and I thought, it's definitely time to lighten things up a bit.  And so I have a have a confession to make.

I am a shallow person.  Yep, it's true.  I really and truly am.  I cannot handle having someone see me at my worst.  These things really bother me.

When I was in the hospital writhing in pain, as a doctor or nurse would examine me, all I could think about was how bad was my breath, when was the last time I'd had my hair cut, dyed, highlighted and low-lighted? How much were my age spots showing?  How bad did my armpits smell?  I think I realized I was totally nuts when one day my GI was upset about how distended my stomach was and I suddenly remembered that I had scars there from my gallbladder surgery last year, laparoscopically, and wondered if my surgeon (aka "Dr. Hunk") had had a chance to admire his work.  Call me silly, but I think he could care less about the scars.  But as the GI guy was worried about my distended stomach I was glad I'd lost my Cymbalta weight and that the belly wasn't as fat as it had been just a couple of months ago.

So it wasn't a huge surprise that when I got home I immediately went to work on hubs trying to get him to see why things couldn't go on like they had been: I was in dire need of getting fixed up.  I needed to get the eyelashes colored again, the brows dyed, the hair done, pronto.  Worse, I realized that I had many doctors appointments scheduled and doing all that work to look human as I'd get ready for an appointment was just too much.  I couldn't even begin to figure out where my eyebrows were in order to color them in, just an example.  My hair, so thin and getting thinner by the day, needed rollers to give it some umph if I were going out of the house and that's just too much work.

So, we finally made the big appointment.  I go to a large city for my works, a bit over an hour's drive and way too much construction and traffic to deal with.  I woke up ill that morning, running a bit of a fever but I realized that the appointments would only be postponed, not cancelled indefinitely.  And, I realized that the reason so many months had gone by since my last appointment was because I'm always getting sick or am sick or getting over being sick.  It was time to bite the bullet and just do it.   No matter what, I wouldn't find a good day and each day that passed I was looking worse.  

Nope.  Hubs wasn't going to talk me out of it.  I was strong and I could handle it.  Hubs gave in, realizing I was impossible.  He finally said the words I've waited to hear for over ten years, never thinking I'd hear them. It was, hubs said, time to find someone who could tattoo my eyebrows in.  I pushed the envelope and added, "and eyeliner too!"  He nodded.  So, now if only I can stay 'healthy" long enough, I need to find a good, reputable tattoo artist.  We are talking about the face, after all....and the eyes too.  That's prime real estate, let's remember.  We do not want the word "whoops!" coming out of anyone's month.

Now I need to explain something: just how much I loathe getting my hair done.  I would rather have a root canal.  I would rather have surgery.  A hysterectomy is preferable to getting my hair done - and I've had one of those so I know what I'm talking about!  Those of you fortunate enough to have hair will never understand this feeling.  My hair is definitely my Achilles'  heel.  There has always been so little of it.  Bad enough that my mom, my daughter and my BFF all have enough hair to fill up five women's heads each. Now with the hypothyroidism, I have less than even my usual.  I've seriously considered just going bald, getting it just shaved.

OK...you get the idea...I think.

So, after getting everything done we were on our way home.  For once I didn't try to con hubs into a bit of a shopping trip.  In fact, when we hit the elevator button, I was so "tired" that I just sat down on the floor.  I could care less how it looked. Manners?  Who cared?!

We got to the car and I couldn't believe it.  My left arm couldn't bend to buckle the two metals parts of the seat belts together and after hubs did it for me, the shoulder wouldn't stop hurting, and a lot. I finally told hubs that once we got to our town, we'd need to stop at the ER before going home.  By the time we reached the parking lot of the ER, I was holding back tears.  I'd taken pain meds and they weren't helping.

To make a long story short(er)... The kind doctor who had admitted me to the hospital last time I was there came in.  In all the madness when I wrote my last few posts, I forgot to mention that we did finally get a good doctor--- after I was horrified to see "Dr. Dear" of the infamous pancreatitis fiasco had come into the room. He had turned around and left and the charge nurse (who knew hubs) got a very good doctor to come in.  She was worried that we wouldn't like his ponytail.  

Was she insane?  Worse, did she think WE were insane and unreasonable?  Not that it mattered, but I loved the ponytail.  It showed that he didn't care what bureaucrats thought...  We hoped it meant that he only cared about medical care.  Not only that, but that probably meant that he remembered the Vietnam War.  

You must read my post (please!) where I explain why our new doctors are, frankly, so cr*ppy.  Oh come on.... I could care less about lawsuits anymore from anything I say, especially since I know that I speak the truth and I do not exaggerate.  My new mantra is, I want them - the robots and unenlightened - to fear ME.  No, I don't want to antagonize, but I've finally had it with the bullying and the incompetence.  I am ticked off, big time, and I'm not taking it anymore.  You  are nice to them and they walk over you, taking you for a weakling.  I'm not going there anymore.  And I have yet to write about the bully nurse, a huge story.  

So, Dr. NicePonytail immediately realized what I had suspected.  I didn't know what a "rotator cuff" was but those words just kept popping into my head during our drive home. It just sounded right and felt right.

Now I'd had pain in that shoulder for weeks but we all thought it was referred pain from the pancreatitis.  But that morning as I was getting ready for my "beauty day," I felt that arm pop. I said nothing.  It was minimal in the scheme of things.

But now it was screaming.  Furthermore, my BP had broken a record.  They got another machine, not believing the reading.  My usual 90/65-70 was a whopping 190/101.  Ah... how I love the BP.  It my "tell" to me of how I'm doing.

The good news is that I do not need surgery.  The bad news is that I need to keep my arm in a sling for a few days and then will need physical therapy.  The danger is a "frozen shoulder" if I don't do things right.

Now, how was my "vanity issue" in the ER?  You'd think good, given what I'd done all day. But, my lovelies, how you'd be so wrong!  I was explaining to anyone who'd listen just why my brows looked so...well, Groucho. Some of the dye was imbedded in the skin, a usual thing that goes away in a couple of days.  Of course I always need a few days to get used to the color and cut of my hair.  There was a bit of dark color under my eyes I couldn't disguise, from the lash coloring....

I can't win, can I?

But there is wonderful news.  The gift of laughter I've always taken for granted and was so afraid was gone permanently, as a result of the Cymbalta fiasco, has returned.  If the run to the ER with the arm didn't make me laugh at my luck nothing would bring it back.  So I am happy that this arm did this little trick.  I may feel differently if it doesn't heal right, but for now I'm thrilled I have something absurd to laugh at.

As to the shallowness of my being?  I'm not sure that is curable!  It was honestly inherited from my mom and if nothing else, I am my mother's daughter.

And on that note, I say my usual.  I hope everyone is feeling their very best, only better. Ciao and paka! 

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  1. Irene, thanks so much for your kind words. As far as the British health system is concerned, ME does not exist! I think my only hope is to try and see a doctor outside the UK. Even if it's not possible, at least I know I tried. I'd like to know what's going on in my body! And your blog does help to keep my sanity and make me feel less alone. Thank you so much for that. On a lighter note, you made me laugh with what you said about being shallow and hating people to see you at your worst. That sounds exactly like me. Funny how people don't seem to notice the things that are so glaringly obvious to us! I spent a month in India last summer and your photo of the pedicure by way of fish, is one of the things I did not try. Maybe next time! Sorry to hear about your shoulder and hope that physical therapy will help. Take care, Alpa xx

    1. Thank you for your reply, Alpa, and the laughs as well! I'm frustrated for you about the ME and the state of care of it in the UK. There are many people I've gotten to know on twitter who have ME and live in the UK. They may have some ideas for you if you wanted to join twitter. I've found great support there.

      I'm so glad that the "sanity" issue is being dealt with here partially. (LOL?!) Yes, we who have ME seem to be a perfectionist lot. I noticed that right away when I started trying to figure out what was wrong with me back in the 1980's. My doctors, who were pioneers in fibro in those early years, were always noticing the "perfectionistic" thing as well. In fact, there was a lot of controversy about it. Some thought it was profiling.

      My personal theory is that it is one reason why we get sick in the first place. We don't realize our limits and work so hard till we fall, literally. Others rest, we think we need to keep going. We get better and think we need to do everything that got dropped when we "stopped." Then, of course, everything is a vicious cycle.

      This is one of the HUGE problems I have with the whole PACE thing, GET as well, as I understand it and anyone who says exercise, go into it slowly, etc. They are putting any failure at our feet, not at the feet of the medical community. But as you see, I can go on about this sort of thing forever....and have! xx

    2. Thanks for your reply, Irene. Are you not meant to be resting though?! I will think about joining twitter, although it's one thing to write here and another to write there. Thanks for making me laugh AGAIN about the 'sanity' issue. We are completely sane, it's other people who have issues with it!

      Interesting personal theory and it makes sense to me. I certainly don't know my limits and find it impossible not to go over the limit. Pacing just doesn't work for me.. I have problems with that and CBT and GET, the only 'treatment' available here. Been there, done that and it almost killed me. I never recovered from it. I knew GET was making me worse but had no idea what harm it was doing. As you say, it simply puts failure at our feet and gives the medical community a get out clause. Like they need any more excuses?!

      The bullying and incompetence is also a big deal with me. I don't keep quiet about it anymore! I've just drafted letters to medical 'professionals' who don't have a clue what it means to be professional or competent.

      Take care and thanks again. You are a star! Alpa xx

  2. Hi Irene~~
    My name is Susan and you know me on Twitter as liberalibrarian :-)
    I love your blog & Twitter posts. You inspire me to try to laugh at my fibromyalgia, depression & asthma! I work full time (as full time as I can, thank goodness I have FMLA coverage where I work so have more sick time w/o pay)...maybe I'll get to retirement two years late if I should live so long. Right. You see my frame of mind.
    You also inspire me to start writing my blog again & to fix it up. Thanks for your insight, humor, and pathos :-) I think I've not been vain enough what with my illnesses so reading about your so-called vanity, I think it's great that you work on your appearance. I shall make the needed appointments this week to spruce myself up. And see the dentist--you know how we fibro spoonies HATE going to the dentist. Pain. Pain. Pain.
    Say hi to me on Twitter please, love liberalibrarian

    1. Hi Susan! Oh my! What a beautiful comment! Thanks so very much for writing in and for saying that the things I babble on about are actually making a difference in your life.
      And you brave soul! Getting fixed up, most especially the hair, is infinitely worse than the dentist.
      Finally, another book lover! Ahhhh! Life is good, life is sweet! ;) I so look forward to getting to know you better. Blog! Blog! Blog! :) xxx