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 gratitude. Show all posts
Showing posts with label gratitude. Show all posts

Sunday, February 24, 2013

A "Picturesque" Thank You & Look Back

And always, always, thanks to my wonderful hubby of 37 years...

And we're here!  It's been a year since I started in on this little "adventure" of mine!  There were certainly many, many days when I didn't think I'd be able to keep up with a blog, but somehow, taking it one day at a time - often just one hour at a time - and here I am!  Am I allowed to now call myself a "blogger" after a year? What really ARE the qualifications?  

At any rate, it's been an incredible year. I started out completely uncertain about how I'd be able to do a blog because of my health and my incapability to work anything technical. I was completely intimidated by my PC. Oh, the dreaded computer and I are still not very good friends.  Actually, I'm not sure my iPads are very pleased with me either.  However, my PC and I have, at least, come a long way in our relationship.  I don't yell at it quite as much as I did in the past.  In turn, it cooperates a little bit better than it used to.  But it's still a bit of a "frenemies" sort of relationship.  And to think I never really understood the concept of "frenemy."  I do now!

My posts were all too long and STILL are way too long, I know.  I have been working on that, I promise.  In fact, I promise to work harder in the upcoming year on keeping the posts shorter: MUCH harder and MUCH shorter! (I've been too long-winded of late, after doing so much better for about a month - or less!)

In the meantime, I've SORT of conquered the photo part of getting my precious moments into the posts.  Why I ever started down THAT road I'm not sure since some days finding a picture has been more difficult than finding a topic.  I have a picture in my head but then I have to find it in the files and it isn't there.  Too often the picture I'm thinking of is with my mother, many states away.  If it's not lost for all time, that is.  But usually it's because I don't understand my files...

Actually we started with the picture which I'd somehow gotten up on my original Facebook page (it's still not changed), the picture which greets you every time you come to this blog.  It's a combination of my daughter and myself at about the same ages, though decades apart, of course!

The second post was a challenge because I didn't know how to post a picture, didn't know how to put up an avatar (is that the right word?) but finally figured the photo thing out - after about 12 hours of screaming and crying.  The post was about the Oscars and our family's love of movies and that special night.  Our religion is, practically, Oscar night.  And so it was only appropriate to talk about them.

And so it's only appropriate to go back to some of those pictures and memories on this day of the Oscars and my blog's first birthday.  I hope you enjoy!

The second "real" post picture of my motley threesome in a pub in England...


This was two of the crew from a previous year when they didn't want to go to England because they were afraid of missing the Oscars!  What?  Ruin my chances of going?  Were they nuts?  But they decided it was OK once they called around and found out that England broadcasts the Oscars as well. What 7 and 8 year olds think of these things?  (Picture link to another post, about my sudden inability to read...)

I explained to you about my history with anything like watches and computers: I even apologized for having broken Big Ben on our honeymoon on August 5, 1976.  But this is a picture of another trip, with my BFF of over 40 years.   I don't talk about her too often, trying to maintain her privacy to SOME degree.  As soon as I get her permission you'll hear more about her! 
Spring came around and I realized I could take pictures myself!  You heard  about my  love of gardening, which was something that fibro and CFIDS/ME/CFS took away from me...though the post was about the on/off phenomenon of the DD.
Rather early on you learned about my love of family and our love of laughter....
And rather early on I got into skincare - seemingly an odd direction to go into but evidently readers loved it: those are always highly read posts.  We can't always be our illness and it does tie in with our funky skin...
Soon you learned about my Russian/Ukrainian background, especially when "my" Easter rolled around - at the "wrong" time...

Often just the time of year would give me a topic to write about....
You saw some of my childhood pictures but there were lots of things that haven't been discussed on that front!  (Believe it or not!)
I've not had a chance to talk about some of my family and what I discovered about  relatives when my mom and I went to Ukraine and Russia after the Soviet Union fell apart...but there's still so much more to go into with fibro and CFIDS on that front...intrigue!
As I became more sure of myself I ranted about the NIH, the CDC, the American College of Rheumatology and the fact that into my fourth decade with this wretched illness, things have not improved much... For SHAME!!!!
We talked about fibro and CFIDS/ME/CFS symptoms, especially sleep, though there's still so much more to say and places to go with that alone.  I tried a few book reviews but my health was such that for the first time, as far as I could remember, I wasn't able to read....
I've not touched too much on our family's love of travel, here on a school trip to Spain, with two of my children and the teacher in charge.
Although you did learn of how my second child went from this....
...to this...
...to my flying through 12 time zones to Kuala Lumpur and Malaysia for my son's wedding....



There has been so much more.  For example, I made friends with a few followers.  A few helped me with my own problems and I'll be indebted to them for ages.  I joined twitter.  Although I'm still trying to figure my way around on that front, I was rewarded with a new family made up of friends who have been full of encouragement, not to mention laughter.  

Because of social networking, I've connected with old friends, near and far.  I've made new friends, near and far.  I've gotten encouragement from camp friends from my past, such an unlikely source.  I've gotten encouragement from high school friends, from places that I never expected or with circumstances which are too complicated to explain or believe - and I'm so thankful for each and everyone of those friends.  

I've had surgeries, more complications - thanks to this dreaded fibromyalgia and CFIDS/ME/CFS - but I've learned from every person I've been in any sort of contact with over the past year and am indebted to them for that alone.   

So a huge thank you to everyone.  I can never express how thankful I am to you all.  I know that when I see those thanks written sometimes in other places, I too often think, "how much can they mean it?"  

I now know that they really DO mean it -I just hope it's a fraction of how much *I* mean it, however!

So, as always, I wish everyone the best of health.  I hope that those not ill stay that way and that those who ARE ill feel their very best, only better.  Thanks you so much for being here FOR me and WITH me. Tonight when I watch the acceptance speeches at the Oscars I will understand how hard it is to truly thank everyone. We've come full-circle on this little blog.  I only hope I can keep up with it another year because it's given me so very much.  

In the meantime: ciao and paka!  And a huge THANK YOU

Friday, November 23, 2012

Friday Tidbits: Changing Gears

An old High School game where we definitely needed to change our  strategy: something not easily done these days!
Do you have problems shifting gears?  It's one of the things that upsets me most when when it comes to my "psyche" and it's one of those pieces of information about the wretched CFIDS/ME/CFS and fibromyalgia nightmare that has helped me the most.  (Information is power!)  Once I realized it wasn't "just me," but the illness(es) that made changing from one thing to another so difficult, I could breathe more easily.  That's not to say that I'm finding it a whole lot easier to live with the DD.  It's just that I don't beat myself up as much as I used to, knowing that this is a problem that's a "classic" symptom of this whole mess.

And so having survived what the jaded part of me thinks of as the "dress rehearsal" to Christmas, that is, Thanksgiving Day, I realized today just how much I'm still learning to adjust to living with the DD.  Honestly, I DO love Thanksgiving.  I just wish Christmas came a little later so that we'd have a bit more time to recover from one holiday to the next.  But here are a few things I discovered or rediscovered, all having to do with the "changing gears" problem, in one way or another.

  • Do the bath, hair, makeup and dressing BEFORE the day begins.  In other words, don't backtrack if it can be avoided.  Every year I tell myself I don't want to be sweaty for dinner and yet by the time dinner's almost ready and it's time for me to make myself "presentable," I don't have the energy to climb back up the stairs and go back into "clean myself up" mode.  And might I add, that I've not cooked a turkey feast in at least ten years - this from someone who thought that making five desserts was slacking off and I actually did need to hose myself down!  Honestly, what do I possibly have to get sweaty from these days - other than the huge effort of commanding hubby and kids in what needs to be done?  (That last part was sort of a joke!) Yesterday I finally remembered (!) that exhaustion, forced myself to come down "prepared" - and it was great!
  • Don't let family (or friends) talk you into going for a bit of a rest before dinner!  Evidently, I was looking a bit peaked and against my better judgement, I was talked into going for a rest, with number #1 daughter doing the push-mom-up-the-stairs maneuver.  (There IS only one daughter.)  By the time I settled into bed, number #1 daughter reappeared to tell me it was time to eat.  Ah!  No more, dear daughter....  Huge mistake on my part, a rookie one at that.  Shame on me!
  • If eating at the table is a hardship, try to plan out your strategy ahead of time as much as possible - and try to stick to it.  It's the "surprises" and sudden change of plans when I'm especially exhausted that contribute to the gear-shift problem.  If sitting at the table and eating makes food taste like cardboard - thus becoming a waste of calories - just take tiny portions and "fake" the eating.  Try to remember that you're really there just for the socializing.  I have no idea what got into me yesterday (other than the obvious huge quantity of food) and for the first time in ages, I ate too much at the table.  Well, when I crawled into bed, my stomach was full, but my taste buds were not at all satisfied and I had my "in bed" Thanksgiving dinner as well.  I'm sticking to the old plan from now on!
  • "Let's go into the other room for dessert."  This may very well read as a contradiction but this whole mess we're in is a huge contraction.  So, having said that....  Yesterday a new tradition was begun, though somehow I SUSPECT that this won't work QUITE as well if you have a large number of people getting together.  We only had family and so "the other room" this year was my bedroom.  Usually we have dessert at the table, with me about to pass out, literally.  But because the filter between my brain and mouth wasn't working well yesterday, I found myself saying, "why don't we eat dessert upstairs?" It worked out beautifully, especially as hubs was extremely tired from cooking since 7AM with no break.  Yes, TV was awful, but we all had a great time lounging on the sofa and bed and having great, though exhausted, laughs - the perfect way to start burning up those awful calories!

So, having problems with shifting gears?  We still have Christmas and New Year's to get through.  Hopefully, the information here may give you another weapon for your arsenal!

I hope everyone had a wonderful Thanksgiving Day.  I certainly had much to be grateful for this year besides my family's health. I also had another great gift this year: that of the spoonies and the many friends I've made via Facebook, blogging and twitter, old and new, near and far, some very, very far!  I've had great support from so many in a year when I truly needed it, so thank you all - I think (hope!) y'all know who you are!

I hope everyone's doing as well as can be, only better. Ciao and paka.


Friday, August 31, 2012

Friday Tidbits: Labor Day Weekend

Back in the day when you couldn't wear white after Labor Day.

It's Labor Day weekend, the unofficial end of summer here in the States.  Yay!  Monday is a federal holiday and I'm ready for some extra time with family.

Holidays are funny.  You can expect so much and get very low when reality hits or you realize that you are feeling cruddy and begin to think that you're wasting a perfectly good three-day weekend.  Or just the stress of it all gets to you.

So, I thought I'd end this week with a list of some of my very favorite things and/or things that I AM so grateful for, ones I perhaps don't think about or verbalize often enough, or things that happen rarely, but when they do....!  My hope is that it gets everyone in the best mood possible and thus increases our enjoyment of this special weekend.  Here we go!

I love it...

  • When someone doesn't realize that I'm seriously ill, if at all.
  • When I have the ability or opportunity to get someone to smile.
My happy daughter, my good friend and I "do" FAO Schwarz in NYC...

  • When I can help someone.
  • When I can accomplish anything at all and REALLY realize that I can still be a part of life.
  • When I have a day when I can get out of the house, or even out of bed.
  • When my pain meds actually work.
  • When I see my kids healthy and happy.
  • When I have a clean house - so I'm not stressed over what I really want to do, but can't, and can really enjoy my surroundings.
That's all that left of Sarum: and a "happy" demonstration!


I love:
  • My friends, near and far.
  • My many doctors and other medical professionals who've really understood me and helped me over these many, many years.
  • My BFF.
  • My hubby - especially when seeing that he's not stressing out over me.
  • My kids, period.
Always laughing and making others laugh: that's my daughter.....
  • Books.
  • Pictures of my friends and family, over the years, and the memories.

Summer get-togethers of kids and kids and kids....
  • Flowers.
  • Travel.
  • Talking to my BFF for too many hours over the phone or via FaceTime until we both get "phone ear."
  • Knowing that my BFF knows exactly what I mean.
  • Telling or asking hubby JUST one more thing all day long, but especially as he's just about to fall asleep...
"So, what do you think about...."
  • Sleep!
  • Not having to make a decision.
  • People-watching with my BFF, especially at a swanky place which does a tea.
My BFF takes tea at the Ritz in Paris (we didn't actually stay there!)
  • Finding yet another coping mechanism for CFIDS, fibromyalgia, migraines and other "inconveniences."
  • Dinner around the table on holidays.
  • A good meal in bed.
  • Laughter!!!
Washington, DC, out on the lawn in front of the Library of Congress.

  • Laughing so hard I fall out of bed - which literally happened to me twice in the last two days!
My son always knows how to have fun and how to make people laugh.....


I hope everyone gets to laugh so much this weekend that they ALMOST fall to the floor.   Happy Labor Day weekend!

And as always, I hope all are doing the best they can be, only better.  Ciao and paka!