Reflecting and Rejoicing

Laptop To GoToday is the culmination of weeks of deep reflection for both Steven and me! May 27 marked his one year anniversary of his stem cell transplant, and the days following mark a collection of all the unimaginable ups and downs that followed that auspicious day. I vaguely remember posting photos and updates to Facebook for our friends and family. But it’s been shocking for me to see them all again compliments of Facebook’s “Memories from 1 Year Ago” function. There have been days where I wanted to find Mark Zuckerberg and yank out his nose hairs so he has something unimaginable to remember next year!

The DriverThis biggest difference today is that for the first time in many years, Steven is driving us to Gainesville for his one year follow-up appointment. His stamina is slowly increasing and his confidence is re-building. I credit much to our weekly drives to babysit Lil’ G, the most handsome grandson in the world, There’s nothing that builds stamina like a teething 6 month old, and there’s nothing that builds confidence like finally getting him to sleep!

We have no reason to think anything bad will come of this Steven teaching Gvisit, since all his blood tests have been showing improving numbers each successive time. But unfortunately, Steven did make the decision to forego the 6 month PET scan thanks to the crappy Obamacare insurance we have. Our particular plan comes with a retail value of over $1200 a month for insurance. If we hadn’t been governmentally forced to sign up for insurance, we could have just saved the monthly fee since it barely pays for any of our medical needs right now and then we would have had the $1200 to pay for the PET scan. Unfortunately with a job that is no longer lucrative, we couldn’t have both. And, since my employer doesn’t HAVE to provide health insurance…well I think you’ve got the picture. I’m just abundantly grateful that LAST year I worked for a large corporation that was able to provide the option for coverage that mostly covered the enormous expense of what turned out to be a million dollar make-over for Steven. Even though we drained all our reserves and then some, we’re here…Alive and bitchin’!

Meanwhile, back at the ranch, Steven’s old “treasure chest” of medications is empty. For the first time in years, he’s only taking  3 medications and none of them are meant to put him in a coma. He’s been able to manage his pain with over the counter options, and the other side effects of the chemo have somehow evened out to the point when he can control them. It’s awesome to have hime back at 93%…I can’t give him 100% because it’ll go to his head if he reads this! And he’s gotta lose some points for the chemo brain.

CorvetteWe’re making great time driving through the Ocala horse country. The grass is green and the sun shining on the few rolling hills you can find in Florida. On this beautiful day, it’s hard to believe how our life has changed in a year. Steven is literally a new man. We are grandparents. There’s a 1975 Corvette Stingray in our garage that thus far hasn’t moved on it’s own power, but Steven has been making progress in that direction and is enjoying the hell out of the project. I know we’re on the brink of a whole new life and I’m excited to see what comes next. As usual, I wish whatever is coming next will hurry up and get here, but just like Christmas, it’ll be here when it gets here. And until then I’m just trying to limber up for all the bigs hugs we’ll be getting and giving when we arrive at Shands.

Hey…It’s been nice chatting with you again! I hope we can do it again soon!

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A New Beginning

I’ve been trying to be a better person in the last year. One of the big challenges I gave myself was to try living by that old adage, “If you can’t say something nice, don’t say anything at all.” Notice how long it’s been since I wrote anything?

Since my last post, I’ve been trying to find some way to put a good spin on my new career path and I’m just having a backwash of words building up in my pipes like a men’s room toilet in a bus station…stuffed with TP and a cherry bomb! So while I continue to figure out how to harness the overspray that’s coming, I’m happy to repost my entry from this day last year. Today we celebrate Steven’s 1 year anniversary of his Stem Cell Transplant and we are both filled with joy, hope and gratitude for all the good that is in our lives.

The World According to Alexandra

Stem Cell LabToday is the day.  On the transplant calendar it’s Day 0…To camels it Hump Daaaaaay…For everyone else, it’s just Wednesday! But to the entire 7th floor of Shands Cancer Hospital, today is the start of a new life of health.  Everyone is aware that today is our Day 0,  and I’ve been getting huge smiles and high-fives from all of the staff as I walk up and down the halls.  First thing this morning, I cleared out some of my stuff from Steven’s room and stowed it in the car.  There will be a constant parade of people in and out of here today, and I don’t want anyone tripping over a stray flip flop.

Steven’s stem cells are  coming back to him all cleaned up and defrosted after being frozen for almost a month since collection.  The bags are thawed one at a time as the prior bag gets…

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Whoo Hoo!! I Got a Job

IIMG_1508f you read the title and the word “FINALLY!” entered your brain, you can bite me!  I haven’t been slacking for no reason…I had a very good reason!  I decided that when I was so surreptitiously dismissed from the last hell I called a job that I had some serious issues to work on, and I’ve been doing just that.

I won’t lie, I was madder than hell at first.  I felt the same way I felt when my “starter husband” dumped me.  WTF???  You’re dumping ME?  After all the crap I put up with?  I should be dumping YOU!!  And there it is…what do I have to learn so this doesn’t happen again?  So since August, while I haven’t been blogging, I’ve been backpacking through Europe in my brain.  I’ve been finding myself again and I finally remembered that I wasn’t lost and that I’m freakin’ awesome!

I’m not beating myself up for staying in the crappy working situation for the last 3 years. DUMBASS I’m thankful.  It was my part of the pain and suffering that Steven and I needed to weather in order for him to get the stem cell transplant.  He had to suffer the bodily pain to be healed, I had to suffer the mental anguish.  But it was worth it for both of us.  His cancer is gone and we had the health insurance and income to afford it.  So, the crap that I endured was all for good reason.  And I hope I never have to do that again, but if I do, I probably will!  Because that’s how I roll!

I also determined in retrospect that this dumping wasn’t surprising.  I was duly warned by another designer who been there previously that they were the worst people in the world.  Of course I thought that might be an exaggeration, which is wasn’t, but I knew going into it that it would be a hornet’s nest.  And I chose to go in.  (Note to self – I had been warned about the “starter” husband, too…just saying’)  So apparently I will dip my toe in hot oil if I think it will grease my way to a better place.  And it has…both times…

 

2012-07-14 16.48.42I also spent a lot of time staring at my “Magic Eight Ball Orchid” which is still blooming Bee Tee Dubs, contemplating my navel and being thankful.  Throughout the years, I have been able to extract myself from the bad times and turn them to good.  So maybe I don’t have “issues” as much as I have “life.”  And each extraction from bad has turned me toward really, really good.  And the choices I make are just that, choices.  And choices are never wrong, they just might sometimes be bad but sometimes we have to make bad choices to get to a good place.

These last months of unemployment have been glorious.  I lucked into the time to spend IMG_1584with Steven during the most boring part of his recovery.  He’s not been sick, but not yet well.  He needed company, encouragement, entertainment and laughter amidst the naps.  That is what I’m all about!  It has been wonderful for both of us.  And his stamina has improved enough that he’s ready to start doing some things without a chaperone.  And I’m ready to leave him without worrying.  So it’s time to move on to the next adventure.  And so we will.

That’s my big discovery.  And it seems the biggest are sometimes the smallest which is really big!

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Happy Holidays to You and Us

Coda & Lil GWith the typical beginning of the holiday season being Thanksgiving, we started out with a bang…or maybe it was a SPLAT!  Cue the sound of water breaking! Is that the sound of a tall horse peeing on a flat rock?  No sir, it was the soggy sound of a newborn’s pre-flight check list!  We were over the moon to be blessed by the early arrival of our first grandchild.  His due date was December 5th but  he decided to show up unexpectedly before the holiday, and kept the new parents in the hospital until Thanksgiving day, thereby showing us IMG_1503all who will be running the show for a while.  But we are all thankful that his arrival was fairly easy as fast for Alexis (or as easy as it can be to squeeze an oven-stuffer roaster through a ketchup bottle), steady but controlled enough for Matt to navigate the rush hour traffic from work to home to hospital, and timely enough for the whole herd of grandparents to arrive before he landed.  We now have a beautiful baby boy to cuddle and love, only to pass him off to Mom or Dad when he starts to smell bad.  I think because his mother has worked on special events at Walt Disney World for such a long time, Lil’ G loves nothing more than having a Pyro Party in his Pants!  Cue the fireworks and hand him off!  I knew I’d love being a Nana!  Steven has chosen to stay with Shreve as his grandpa name, leaving the other more traditional names to the other grandpas.  It fits!

FU** CANCER TATTOOIt’s hard to believe we have more news even better than our baby’s baby…but we do!  It looks like Steven will be around to show this addition what NOT to do for a LONG time.  The results of last week’s PET scan came in the form of a 1/2 page report which was “No Abnormal Activity!!!”  In layman’s terms that spells NO CANCER.  Another holiday miracle for our family!  Even though we had no reason to think otherwise, it’s always great to get confirmation in black and white!  The IMG_1529stem cell transplant worked, the new cells are doing what they are supposed to be doing without being mugged by any Crips or Bloods gang cancer cells and we are breathing completely normally for the first time in 12 years!  To celebrate this momentous event, Steven got himself a new tattoo that is totally inappropriate for a new grandpa…or 62 year old man for that matter.  But somehow we both decided that it was perfect for the situation, so an early Christmas gift was permanently etched on his forearm today to mark the end of more than a decade of sickness and worry.  Sometimes inappropriate is the only way to go…thus making it appropriate!  I don’t have a single tattoo on my body, but I kinda want a smaller version of this one.  But I also want to win the lottery, so we’ll see how that goes!

All Knowing Orchid - December 2015

The All Knowing Orchid

And finally for today I checked with my magic crystal ball substitute…my monster orchid plant.  To refresh your memory, it started blooming the day I was laid off from my job.  That was August 5.  Not only is it still blooming, it has thrown off 4 new shoots with buds on them all.  I know I need a job…I puke a little in my mouth every time I remember that I had to sign up for Obamacare……there it goes again…a little puke.  But the buds are telling me to hang in there and not worry, it will all work out.  And that’s exactly what I’m doing!

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We Now Return To Our Scheduled Program

And, we’re back in 3-2-1….

I’ve been looking for work…probably in all the wrong places.  So for now, I’m still a slug and quite frankly it suits me.  Steven is getting some energy back and we’ve been trying to get our home back to an organized state after the whirlwind that has been our lives.  I miss my dogs like crazy, but it’s been over 6 months since they were adopted out, I’m finally able to clean the lint trap in the dryer without finding enough dog hair to build a new pup!

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And I can finally look at pictures of them without bursting into tears.  That is an accomplishment of monumental proportion!

IMG_1432Also on the up side, I’ve been thrilled to spend so much time with Steven. After 3 years of way too much time apart with him in hospitals and me in the car driving for hours to and from a job that was sucking the life out of me, I like being home!  In retrospect, it was a blessing to have had the opportunity to make some decent money for a while and get good enough insurance coverage to manage a stem cell transplant.  I went back into my insurance EOBs, just for shits an giggles, just to see the “retail” cost of this transplant which I think is considered reading fiction so anyone going into this type of procedure should read this with a grain of salt, but whatever, I had the time!   From initial visits for stem cell collection which took 4 full days, the 37 days in Shands hospital and then the weeks of daily out patient visits while we stayed in  Hope Lodge, we garnered a 5″ pile of claims and we racked up about $3 million in costs billed to insurance (again…we all know are storybook numbers, right?).  I’m sure it would have be a good deal less without the added cost and excitement of the C-diff infection and the Cardiac SWAT team incident ($131 K for that day alone!!!)  So to celebrate that outrageous and mind boggling number, and because our COBRA insurance is now paying at 100%, I treated myself to some arthroscopic knee surgery on both knees to fix years of overuse, misuse and fun!  WTF…if I’m paying for COBRA I’m using it!

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What a pair we make!  I’m walking OK after I get warmed up, but I do start out each and every new steps with a few “Grandpappy Amos” moves that should embarrass me, but just crack me up!  Somehow this entire year has knocked the vanity right out of me.  I’ve learned to “own” me…skin tags and all!  I never thought I’d admit that we have a handicap placard and sometimes I have to use it for ME!

Steven moves faster than me, but wears out way quicker.  Our first few outings were something to behold.  On one of our first trips to Lowe’s he pooped out in the hardware aisle and couldn’t walk another step.  I found him a perch and had to go get one of those “go carts” for him…only I couldn’t figure out how to get it to move…Bee Tee Dubs – DO NOT TRY TO DRIVE AWAY WHEN IT’S STILL PLUGGED IN!!!! #learningthehardway!Steven 11-12-15

Our adventures will continue long into the future and we’ll both get better like fine wine.  But for now we celebrate the baby steps…Steven’s got hair and I can kinda walk without limping.

 

IMG_1450Alexis will be squirting out our first grandson any day now and life is good.   We are excited, happy and looking ahead to all kinds of good things.  There are days that I just can’t believe the crotchety old grouch-bitch that used to live inside my head seems to have disappeared into the mist.  I know I’ve been consciously trying to pack up all my old baggage and crap during this “hiatus” but seriously?  Who ever thought it would work?

However…Steven can’t work for now and probably won’t for a while.  I haven’t found a job that I can land, and we should be panicked, but I’m not and neither is he.  What’s with that?  I think it helps that God keeps the orchids blooming in our yard reminding us that we’re SO not in charge of any of this and that it’s all coming together the way it’s supposed to.  So I’m glad to be back writing and I hope all our BMT cohorts on the front side of the experience can look at us as positive reinforcement to hang tough, be positive and believe it’s going to work out…even if it doesn’t seem possible.

We haven’t watered, fertilized, pruned, clipped or tended these orchids in years.  We decided to let God do the gardening for us because we just couldn’t MAKE it work. Sometimes you just got to believe!

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Thank You HD Supply

IMG_1253There is major Reduction in Force (aka RIF) going on within the company in Orlando. I was the first casualty. Unfortunately, that kind of thing is unexpected and is so overwhelming that things happen that are beyond immediate comprehension. One of which was the signing of the release paperwork. Apparently in my stupor, I signed away any rights to to say, publicize or think anything negative about said company. So thus far I have been silent. However after 2 weeks and lots of martinis, I can now say “Thank You” for releasing me.

IMG_1289Thank you for giving me my personality back. Over the last 3 years I had become so very negative. It was never obvious to me until I spent time with Steven living in the hospital at Shands. While he was literally flirting with death trying to fight the c. Diff. infection, I realized that I was more level and in control with him there than I ever felt in my “regular life.” After 2 short weeks, I now feel like me again after being canned, so thank you for giving me back to me.

Thank you for giving me the time to spend 24/7 with Steven now that his recovery is IMG_1270coming along.  I’m so grateful to have the time to be with him while he regains his strength and stamina. I know that being cut off from our health insurance during this critical recovery time probably seems inhumane but it is a great opportunity for me to work on my bookkeeping skills in order to juggle funds to afford the mammoth COBRA payments. After reflecting on that, I say “Thank You.” I’ll be a better person for this.

Thank you for the rocky road of management changes within the division that have helped me to be more flexible. After a dozen fearful times of suggested termination by the client to whom I was assigned, I thank you for the nerves of steel I have developed.  I have learned more here than I would as a contestant on Naked and Afraid!  Living among snakes and vermin is the crux of Naked and Afraid.  Thank you for allowing me to keep my skivvies!

YOU WANT FRIES WITH THAT?

YOU WANT FRIES WITH THAT?

Thank you for the schooling on the reality of the FLMA regulations. I mistakenly thought that I could not be laid off during this protected time. I was foolish to think I was safe during Steven’s illness and really thought that if the quarterly panic of losing my job happened on schedule, I would merely be transferred to another position. Thank you for not placing me into another opportunity. I could be working in a warehouse but Thank You for not considering that, or any other position as an option for me.

Thank you for having the goofy little manager give me the news. I would have been so much more upset if someone with stature within the design center department did the deed. Lucky for me, the messenger never made eye contact with me while haltingly explaining that this “Reduction in Force” was “just business” and had nothing to do with my performance. It made me feel so much better to know you think of me as an outstanding employee and are just letting me go because so much business has been lost by the division. Thank you for that buoy. Great to hang on to something like that! You can’t imagine how that made me feel.

And thank you for sending the giggly branch manager to give me the news. It was a great exercise in my detective skills in figuring out what to do once the shock had worn off. If he had given me the 14 page departure packet, I never would have haIMG_1231d the opportunity to work on my research skills. Thank you for getting me off my butt to refresh my googling abilities!

And most of all, thank you for doing this to me for the second time. I can be a slow learner but I do learn best by repetition so thank you for that. Manager boy suggested I check your website for future job openings. My daughter has threatened to kill me if I do. Thank you for opening that door of communication within my family.

My only insight to all of this is that RIF may make companies feel better. Calling this situation “Laid Off” almost sounds like a colloquialism for “getting screwed.” But the truth of the matter is, tomorrow when I get up and DON’T go to work, in the words of Donald Trump, “You’re fired.”
On a totally unrelated subject, I have a query to my IT friends. When you post with an iPhone, how come auto correct changes “Fuck You” to “Thank You?”

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Too Many Thoughts for My Tired Old Brain

IMG_1236Have you missed me?  I’ve been wanting to add a new post for a while, but I just couldn’t get my brain to settle down enough to focus on a any particular idea and organize it.  So today might just very well end up as a smorgasbord of semi-connecting concepts.  But I’m going to share anyway, because I think this is a direct result of the past year (yes…surprisingly it’s been that long!) and I’m trying my best to keep it real!

  1. Steven is doing great.  That’s the most important topic of every day.  His last visit with Dr. Sprawls had the doctor in awe of the progress and the full experience of what’s gone on.  He can’t believe that Steven was taken right to the very edge of death only to come back as the new-new and improved Steven 3.0 (For a little more history, read A Thank You to Cancer For Steven 2.0 from February 2011)  Steven knew the doctor
    SISTER MARY STEVEN...LOL!  HIS HEAD IS ALWAYS COLD!

    SISTER MARY STEVEN…LOL! HIS HEAD IS ALWAYS COLD!

    was more amazed than we are because he kept repeating, “You know they gave you LETHAL doses of chemo, right?”  The answer to that, by the way. is YES!!!!  We know…even though we tried not to think about it at the time, the days after the transplant, Day +7 through Day +20 to be exact, were fucked up!!!!  For poor Steven, I’m pretty sure his main thoughts during that span were that he knew he COULD die, was pretty sure he WOULDN”T die but absolutely felt like he HAD died and gone to HELL!  And now we’re through it and it’s changed life for both of us in the most extreme way…and I can’t even put it in to words yet.  The only thing I’ve got right now is “Fucking Unbelievable” and I don’t think that’s really an article for Yahoo Health!

  2. Facebook has this new annoying addition of grabbing a throw back photo from IMG_0577a past post and popping it into your news feed just to screw with your brain.  I’ve been in a tailspin since July 27 when I had a photo thrown in my face of Maritza and Zoey in the backseat of the car with the caption, “Maritza and Zoey want a dog…going to try on a few!”  It made me so sad that we picked out a new puppy, waited anxiously for her to be old enough to come home to us, got her home just to find out that Steven’s chemo hadn’t worked.  After a lot of sickness and hospital stays mixed in with puppy training and being outnumbered by high energy canines, we ultimately had to find new homes for all three girls in 1 year.  And then added the transplant process on top of that.  Seriously, God…WTF?  YouPREGNANT PEDICURES might me giving me too much credit for strength!
  3. The news that Alexis was growing us a grand baby was the turning point in grabbing on to a life line.  We found out right before the transplant and it was the ray of light that we turned on when things were the bleakest.  Sadly, I went way overboard on my prediction that I was getting a granddaughter.  Thank you God for making me leave the bag I brought from home in the car.  It held a few items of hand-made heirloom girl clothes that were made by me and my mom when Alexis was a sprout.  I can’t decide how crazy it is that I would hang on to that stuff or how embarrassing that it would have been to present a pile of couture cross-dressing styles to her in front of her friends.  Either way, I just wish I could have gotten my face to keep smiling without my eye twitching and FEED MEmy mouth tensing up in a grin resembling The Joker!  Unfortunately, I’ve gotten the rep of being a big mouth who can’t keep a secret, so I found out the news with the rest of the general public and just wasn’t prepared to be wrong. A little pre-party notice would have been nice!  Surprisingly, you’d think by now that Alexis would know that I always feel like I should get preferential treatment.  But she’ll understand in 4 short months when she tries to push a Perdue Oven Stuffer Roaster out her lady parts.  Next time she’ll know why I feel that I ain’t just the one of the masses!  And, boys are good too and I’m still excited to have a baby in the family.  And I’m not asking again what they are going to name him.  I needed a quick fix to get used to the boy thing, so I decided that I’m calling him Chachi!
  4. I’ve been limping around longer that I can remember walking right.  I’m pretty SWOLLEN KNEEsure I haven’t worn heels in over a year.  This is the first time in my life where I’ve got a closet full of flat shoes, and I really don’t like it.  Seriously, when we first went up to Gainesville for Steven’s evaluation, I actually needed to use his walker to get get around the huge facility.  In between evaluation and collection, I went to a orthopedist who took x-rays and determined a bunch of minor problems.  An MRI was really in order, but I just didn’t have the time with Steven’s full treatment schedule, so I got a shot of cortisone and limped away.  It helped, but not enough to get me on my own feet without walking like Granpappy Amos.  I hated the fact that Steven could move faster than me, so in between collection and transplant, I stopped in for a second shot of cortisone while we were home.  I was told that and MRI was mandatory if the pain continued and it did.  So I did.  When we finally returned for good I squeezed in an MRI before returning to work.  It seems I’ve been hobbling around with a torn meniscus, a huge Bakers cyst on the back of my knee and a bulb shaped swelling of bursitis on the front of my knee.  gallagher_audienceWhen I shave my legs it’s like a trip through the Rockies!  So I’ve got a date set for August 14 for arthroscopic surgery that’s supposed to be a snap.  I don’t see how that can be.  I think the doc is going to drill the first hole in my knee and get hit in the face with a geyser of fluid tantamount to Old Faithful before he even reaches my meniscus.  I’m no doctor but if I can see the fluid from the outside, I can’t figure out how he’s going to get around it without it being like a first row seat to see Gallagher!  Either way, I’ve already got a prescription for pain pills for afterwords and I’m going to insist on a little sumpin-sumpin to calm my nerves upon arrival.  Not for nuthin’ but my pits are sweating already.
  5. And finally, it’s the usual quarterly scare of “I could get laid off at any minute” going on at work.  I’ve never had a job that was so tumultuous and I was a stand up comic for 8 years!  I just work for a builder who loves to chain yank and my bosses either don’t pay attention enough, don’t worry that they still haven’t found anything definite to fill the gap if we do lose the account or, and this is my opinion, don’t give a rat’s ass about me.  After all, I got laid off once 3 years ago kinda in the same way.  And since I believe the rule of thumb is, and I paraphrase, “Screw me once, shame on you…screw me twice, shame on me!”
    YOU WANT FRIES WITH THAT?

    YOU WANT FRIES WITH THAT?

    So that’s another thought for my tired old brain.

For the most part I don’t let it bother me too much.  However, this weekend was the blue moon, so I did spend a good part of Saturday howling at whatever, retaining water and bloating like water balloon and feeling a little sorry for myself.  But today is Sunday, I’m trying to shake off the bad vibes and focus on all the great stuff going on.  So here’s the short list:

  1. Steven isn’t dead and is cancer free.
  2. I don’t have to pick up poop in the back yard.
  3. Granny loves Chachi
  4. Free knee surgery since our out of pocket maximum has been met
  5. FMLA says I can’t get fired, so I wonder what will happen next??? STAY TUNED!  SAME BAT TIME…SAME BAT CHANNEL!

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widgetTHIS IS IT! WE CAN SEE THE HOME STRETCH! Unfortunately, we don’t know when Steven will be able to be 100% self sufficient to be left to his own devices. Until that happens, I’ll be taking assorted days off from work AGAIN…We’d appreciate any help you can give us!  PLEASE VISIT OUR “GO FUND ME” PAGE