Wiped Out With a Smile On My Face:)

So we just returned from a five-day trip to Asheville, NC for the wedding of our nephew. I can't remember the last time we were away with our kids....and THIS time we had our kids AND our granddaughter! JACKPOT!! :) Add to that six cousins (from MA), brother-in-law and sister in law (from Atlanta), nephew (the groom) and new niece (the bride), another nephew & his g/f, extended family, friends ... and OHHH YEAHHH, my mother-in-law!! Haha!!!! So it all worked out great. But AS USUAL, following any trip let-alone a fairly active one, I am thoroughly EXHAUSTED. Something I've learned from having Lupus is that we make choices. We either participate in 'the games' and pay or we don't participate. Sometimes I DO choose to sit it out, but THIS time--I was not about to miss out on one single moment. Actually, that's not true. I DID miss out on some things...and those are usually the ones that occurred after 10PM. I just couldn't push anymore. As it is, I got home and got into PJ's (yesterday) and haven't gotten OUT of them since. I will take a shower tomorrow though, I PROMISE. This is just how it is. And what I am so grateful for is the fact that I don't have to get dressed to go to work. I'm SO fortunate in that I don't even have to work at ALL if I don't want to (thanks to my angel of a husband), but I really DO want to. I did a little work on Etsy today. I added two new items (earrings) which I will post here:

I would also like to introduce you to a new friend I met on Etsy, Anne Pierce who owns "WeeLambieKnits". As soon as I can figure out how to include her link here, I will do so. (Another problem with the lupus & the fatigue is "BRAIN FOG" a/k/a DUHHHH~) Sorry, Anne!!<3

Not enough hours in a day!

I have such a dilemma.  My 'to-do' list is SOOO long and full of chores (more than my usual) and even though I seem to be getting to them one-by-one, I still feel as though I can't keep my head above water!!  And the 'dilemma' is the fact that I just don't have the *ENERGY* to get to it all.  It's one of the most frustrating aspects of this illness.  My head and my heart say:  "I have all these desires and wishes and goals and I need to DO them!"   And with that, my body responds "Yeah, right!!  That's not gonna happen!"  <sigh>  It's something I'm used to by now (33 years) but somehow, it's still one of these areas that I find difficult to deal with.  Should I be less ambitious?  How can I still be productive and purposeful within the parameters of a body that does not cooperate?  Just one of the challenges of living life with a chronic condition...one of many.  I guess what I do is simply this:  I take it one-day-at-a-time.  I do what I can do when I can do it.  And when I can't...I don't.  This week, I am preparing for my beautiful granddaughter's first birthday which we are celebrating in my home on Saturday.  Thirty+ people.  Still have some shopping to do and preparing a few little dishes.  Fortunately, everyone's doing something...so it's not all on me.  And then the following day I will be a vendor at a fundraiser for lupus called "Blues On The Bay".  There's always LOTS to do before a craft show or fundraiser like getting pieces in order, polishing up some jewelry, making sure they're priced, getting my business card together (YIKES, something I forgot to put on my 'to-to' list!) and getting it all packed up along with displays & tables & gift bags OH MY!!  My b.p. is going up as we speak.  All I can do is pray for less pain this week and more energy so that I can accomplish AT LEAST the bare minimum of what I hope to accomplish.  Wish me luck?

Gift of Life (and Love)

One week ago, I went for a kidney transplant consultation at the advice of my regular nephrologist.  Because of my Lupus, I now have 25% kidney function--not too good, eh?  Surprisingly though, my kidneys are not bad enough to go on the transplant (waiting) list...not yet anyway.  My GFR (otherwise known as kidney function) needs to be 20% or less for me to even get my name on the list and that's not all.  The waiting list in question is between 5-7 years for a cadaver kidney.  WOW.  Talk about staring your LIFE dead-in-the-face.  So in the meantime, we wait to see if my twenty~five year old son is a match.  I've been feeling VERY conflicted about him even being tested, but being that he is of proper age to make such a decision--I didn't stand in his way.  He was insistent.   So, I've got no other 'live donor' options at this point.  I thought my brother was a possible donor until I found out that he's been on blood pressure med's for four years now.  So, he's out.  My husband doesn't have the same blood type as I have (O+) so right off the bat, he was out.  Quite a predicament--and as sick as I've gotten over the years, I really never thought I'd be facing such an frightening dilemma.  BUT I AM.  And so, like every other obstacle and challenge I've faced in the last thirty~two years, I face this one HEAD-on.  Full-force.  Full-steam-ahead!  Strong in the belief & the conviction that I will prevail and triumph over this 'little annoyance'.  Just another 'ding' amongst life's dings...and let's face it, we've ALL got 'em.  Some of us just have larger dings than others.  So for now, I wait.  And while I wait, I dream of how different my life can be once I'm on the other side of this.  Me, only better.  *I can live with that.* 

The Beginning

OK.  Where does one begin?  At the BEGINNING, of course!  So, I'll start by introducing myself.  My name is Judy and I'm a 50 <ahem> year old woman (still getting used to that number), living a wonderful life with my wonderful husband.  Our kids are grown and are living their own wonderful lives, what more could parents ask for?  My life really IS wonderful.  My husband just recently surprised me with a trip to Paris (for my 50th) and prior to that, our daughter had a beautiful baby girl!  And if that weren't enough, our son just made his Broadway debut.  WOW!  So, wonderful, wonderful, wonderful!  ON THE OTHER HAND...I'm living with many challenges, due to a chronic illness I've been battling for more than 32 years.  I have Lupus, an inflammatory, autoimmune disease which affects my joints, my skin, my energy & my kidneys.  It can affect any organ in the body and most often affects women, usually in their child-bearing years, (though not limited to).  I was a senior in High School when I was diagnosed and by the time I was a freshman at college, the shit really hit the fan.  I've been on chemotherapy twice (for months at a time) because my regular meds were not enough to combat the "lupus nephritis" which attacked my kidneys.  My REGULAR meds in turn attacked my bones (hips & shoulder, so far) which is why I've had both hips replaced, my first surgery occurring when I was 28 years old.  I could go on.  But my focus is NOT the limitations put forth by my illness, in spite of the fact that let's face it:  My life IS often determined by my Lupus; by how I'm FEELING, by how much energy I have or don't have, by how much PAIN I'm in.  My quest is to accept the reality while striving to be the BEST wife/mother/grandmother/friend/and *beyond* that I can be.  It's the *beyond* that I most struggle with.  And that's what I hope to touch on in the days, weeks and months ahead...to learn how to fulfill my "artist within", this need to create & expand & feel like a productive individual--even within the parameters I've been given.  And so, I've BEGUN!!!