All Dressed Up with No Place to Go

IMG_2101The laundry is all done, the fridge is almost empty, the minor details of life are all on auto-pay and I’m ready for our little mini vacation.  Steven has been literally begging me for months to go on a vacation to the mountains.  I’ve tried to talk him out of it a hundred times.  He wanted to go to Gatlinburg, Tennessee for some unknown reason.  I could give a rat’s ass about most of Tennessee.  I used to work regularly at a few comedy clubs in Tennessee back image95496121in the day and I have bad memories of drunk women incoherently heckling and simultaneously projectile vomiting.  It seems needless to say that I have no desire to visit Tennessee.  My shoes cringe at the thought!  So it’s been painful for me to be hammered for months about getting away for this idyllic holiday to a place I regard as a little slice of hell.

y4m58PGrXQCRrNBNDGdnPpNVCIn5Hrl6U3ieE-AminrVDxOOdBkDZaP2JxnqLf3fOZpI4eBBzn1QPgEsvagr9Cl9mRDiEu6Dfbm4zM7KXtX-B9UcQmdt-vQnKWS_vU8to2aavmJ2fjASWzjqW2bXSKfs63XYfl8gbUmn6m2gyWqcrMrHVvtwxWDDXQuite a few weeks ago I was reading Yahoo News and a click lead to another click which put me on a page about the big Hemlock Festival this weekend in Dahlonega, Georgia.  For whatever reason, it seemed like fun.  A festival celebrating a tree could not be more innocuous.  I could really get into a perfect low-key getaway.  The location seemed perfect as well.  It’s just the other side of the Blue Ridge Mountains that had become Steven’s new fixation.  It was quite a few hours shorter in drive time than Tennessee…and as far as I knew, no projectile vomiting.  So I summoned Steven to Molly’s Porch for a quick family meeting and vacation plans were set in motion.  I requested official time off from Nana duty, and Steven quickly went about making reservations in a pet-friendly hotel and began his due diligence in compiling the historical, meteorological and socio-economic background check on the area.  He LOVES. LOVES, LOVES the planning part of the vacation experience.

Compliments of Steven,  I’ve been getting local temperature and other oddball tidbits of fullsizeoutput_60eDahlonega, Georgia factoids sent to my phone about 4-5 times a week for the past month.  I’ve also been getting snapshots of a live camera somewhere in the town showing me the state of the leaves on the trees, so I can keep up with the fall foliage color change…BTW- it hasn’t happened yet.  I’ve also received text updates from Steven noting celebrities who hail from that area so I can keep my eyes peeled while walking around town lest I trip on a famous person.  And I even got an email from him about the state of the ground cover where the festival is held because the out of town festival is in a grassy area that might be muddy if the weather is too wet prior to Hemlock weekend.   We are prepared for weather dips into the 30s with layers of clothing to protect our delicate Florida anatomy (I use the singular “anatomy” because I’m always warm and Molly comes standard wearing a coat so really, we’re talking about Steven…THE ONLY ONE WHO WANTS TO GO TO THE FUCKING MOUNTAINS!!!)

IMG_2313Nevertheless, we are ready to Rock and Roll.  Today is Wednesday.  I have a little Nana duty later on today and then tomorrow I have the day to get our stuff together for a nice, leisurely trip to…NO WHERE.  Because I always forget that Steven loves to plan vacations but has a hard time going on vacations.  No.  Steven loves to plan trips but has a hard time going on trips.  No.  Steven loves to plan leaving the house but has a hard time leaving the house.  YES!  That’s it!  That’s exactly it.  This morning he informed me he really, really, really doesn’t want to go.

Welcome back to one of the recurring themes in our life after cancer, lymphoma, a stem FullSizeRendercell transplant, chemotherapy and all of those life changing things that Steven has had to endure.  The aftermath of the physical and mental trauma that now haunt Steven cause and so much anxiety stress for him and in turn for me.  It’s such a shame.  We have time and a little spare change to do a few things, but a lot of times, I just can’t get him out the door.  The world is a scary place and when one feels weak and vulnerable, it’s even scarier.  And that’s the bottom line.  Home is safe DSC_0895and secure.  His needs are all met.  His food and beverage are all readily available whenever he wants without any fuss or bother or wait.  If he’s tired he has multiple areas to rest his weary bones.  If he’s feeling anxious, he can take a pill and chill out in a cozy familiar place, or he can go socialize in the big bold world that is right outside our community where home is a blink away if his mood changes and he needs to get back.  Therein lies the distinction between vacation and home.  Vacation is just too far away.

IMG_1846So my job, for now, is to make every day at home like a vacation.  Well, hell…for me it already is.  I don’t have to go to work every day.  I get to see Lil’ G A LOT!  I”m finally spending quality time with Steven in person instead of texting and calling all day from an office or car.  I feel like I’ve won the lottery.  Steven’s life is a vacation, too.  He just doesn’t know it.  He no longer has chores to do in the garden or garage or attic or anywhere that involves tools or safety glasses or power tools.  His daily responsibilities are so minimal that he actually puts in MORE effort when we stay in a hotel.  But he doesn’t see that.  So periodically he decides he needs a vacation and I guess all I have to do to make him happy is to just say, “Yes” to all his vacation plans.  Let him enjoy the planning that he loves so much and just know that we’re not going to go.  Reserve away big guy!  From now on, I say, “Yes!” to going no where!

 

 

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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

Apheresis – Day 3

IMG_1099We’re tired today, but we’re still trying to hold on to the good humor and positive attitude that we brought from home.  The outcome of our first day of stem cell collection would probably have been easier to take if it hadn’t been for that overachiever, Mrs. Johnson.  Steven put out 750,000 CD 34 cells (and don’t you wonder who has the patience for the job of counting all those little suckers).  The goal is 4 million.  Two million is that absolute minimum to do the transplant, but the doctors like to have 4…I guess that accounts for spillage?  Leftovers?  Whatever.  It was fine for us until Mrs. Johnson told us her day 1 was also her day done because her little baggie ended up with 11 million CD 34s.  Bitch!

The low count for us is nothing we could control.  The amount collected is in direct IMG_1098proportion to the amount of chemotherapy and / or radiation that each patient has received.  As we all know, Steven’s had so much chemo that his pee glows in the dark, so this was not a surprise to the medical professionals.  Unfortunately, we always expect a miracle, so when that miracle doesn’t happen, sometimes we are a little disappointed.  On the other hand, we have had a LOT of miracles during this adventure, and it was probably just Mrs. Johnson’s turn, so we really are happy for her.   Yet, I have to end the paragraph with “bitch.”

IMG_1097The next step was adding another ingredient to the mix.  Steven has been getting Neupogen injections twice a day since we arrived in Gainesville.  The first given at 8 AM-ish.  Since the collection started, he gets the shot a little later, after he’s all hooked up on the machine and it’s running which usually ends up in the 9:15 range.  And then we’d been coming back to Shands at 6 PM for the second injection.  But in order to encourage more of those CD 34 cells to sneak out of the bone marrow and party in the blood stream, making them easier to collect, another injection was going to be introduced.  However, that injection must be administered 11 hours prior to collection,IMG_1100 meaning we needed to make our second trip to the hospital at 10 PM for the plerixafor and Nuepogen cocktail.  That’s a great way to keep from relaxing at the end of the day!  You don’t want to fall asleep and miss the appointment time, but you don’t have the energy to go out dancing until 10.

Monday night wasn’t too bad.  We thought it was a one time thing, so we just considered it a really short date, although the planning was a PIA.  Hope Lodge has a 9 PM curfew.  After that, the alarm is set and the doors are locked so if you want out, you have to make arrangements with the night manager to let you out and then back in.  It’s not a huge deal, and our night manager Diane couldn’t have been nicer about it, but it’s just one more little detail to manage.  Regardless of the hurdles, the shot IMG_1101helped and Steven yielded another 900,000 cells which puts us in the 1.6 million ball park. We were getting closer, but we knew we were in for another late night date on Tuesday.

At this time, I suggest to hit the link to see the side effects of plerixafor.  Allegedly that is the generic name for Mozobil.  My generic name for this nightmare is Colon Blow.  Because if the first dose doesn’t act as a total cleanse, the second definitely will.  As if we weren’t tired enough, we didn’t get much rest last night.  If I wasn’t so tired myself today, I’d probably be feeling bad for Steven.  Unfortunately, I’m downright exhausted.  I’m not sure why.  The collection takes about 5 hours and I just sit here with him while the machine does all the work.  It’s not like I’m running a marathon.  And with my knee still giving me problems, I’m not getting a lot of aerobics in back at the Lodge either.  But for the past few days, I always feel like I could fall asleep if I just sit quietly for too long.

So we’re hoping for a miracle again today.  I don’t know if it’s possible for Steven to shoot out at least 2 million CD 34s today, but if the good Lord has it on his agenda, I would be extremely grateful.

widgetWe could sure use your help.  I’ve been taking a LOT of unpaid time off and Steven just won’t get that paper route I’ve been suggesting.  As I continue my entertaining writing projects about our adventures with Cancer, we’d be so very grateful if you’d visit our Go Fund Me Page. Our insurance has a lot of loopholes for things that aren’t covered, and my job has no loopholes for being able to work from home! And I’m gonna do whatever I have to do to keep my husband around. After all, I just got him house broken!

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Here We Go!

Cancer Hospital exterior Today was the day!  Steven finally scored the appointment we have been awaiting.  It’s too bad it had to be at 8 AM, but we were not going to miss it no matter what.  So our alarm went off at the butt crack of dawn, which is a very dark time.  We managed to get out of the house by 4:45 AM so we could drive the 179 miles to Gainesville, FL to meet with Dr. Lynch.

It was an eerily easy trip.  There wasn’t much traffic but there was enough fog to make most of the drive seem like driving into a dream.  We listened to talk radio until the station I prefer started to get that static-y sound that starts when you’re going out of range.  And then we drove in silence.  Not in a bad way, just in a way that is really odd for us.  And then we were there…on time.

It looked the same as it did the last time we saw Dr. Lynch, 10 years ago.  It was all coming back to me, only this time I was noticing other things.  I noticed that I should put Steven’s handicap placard in my car so I can park closer next time I bring him.  I noticed that last time I didn’t think there would be a “next time.”  Whereas this time I hope there are a LOT of “next times.”  And I noticed that as we walked into the building, last time we were nervous, too.

The doctor was the same as I remember too.  He’s got a great way about him that makes you feel like IMG_0914you’ve known him for years.  And, when he talks, you listen – like Smith Barney.  (Sorry kids, I’m not updating my references for you.  Google John Houseman).  It didn’t dawn on me until today that Shands is a teaching hospital and Dr. Lynch also teaches at University of Florida.  I should have picked that up 10 years ago when I first noticed the Gator necktie.  Nevertheless, I realized that he makes everything so clear because he’s used to teaching.  It’s not Cancer for Dummies by any means, but what he says is abundantly clear, even with the medical terms.  So whether you are a patient or a student, you’ll get the picture.

The only downside to Dr. Lynch is that he tells you everything…even the crap you don’t want to hear!  So he touched on the possibility that this whole mess could end badly.   He did present it in a compassionate and honest way.  He waited for us to acknowledge that we understood and then he quickly moved on to the other options that could end great.  We’re picking on of those, by the way, because I won’t even think of any other option.  It’s not like I don’t know the reality of our situation, because I certainly do!  I just don’t like facing bad outcomes before I have to.

voices in my head signThroughout my life I’ve been aware of all the bad outcomes that could happen to me or the people I love.  But if I don’t need to face it today,  I neatly file that shit, using the Dewey Decimal System,  in a card catalog in the back of my brain.  I always know where it is and can grab a card and glance at it when I have to…and then put it right back where it belongs…out of sight.  Because I’ve learned that most of the crap that’s gone wrong around me wasn’t even in the card catalog.  And most of what’s in the card catalog has never happened.  And the few bad outcomes that I saw coming were going to happen whether or not I made myself crazy dwelling in the dark when I should be sleeping! So to be kinda Zen about it, we’ve just decided to be in the moment.  OMMMMMMMMM…

My Water Garden / Meditation Spot

My Water Garden / Meditation Spot

So, we move forward with some nasty-ass chemotherapy that’s going to make my handsome husband a skinny, bald, pasty guy for a while.  In the best case scenario, that will kill all the cancer that didn’t take off for the holidays and kept growing while the world drank egg nog.  And then we’ll do whatever we have to do next to make the bad stuff in his body start acting right by a pseudo in vitro bone marrow transplant that might be his own cleaned up bone marrow, or marrow from some donor.  I don’t even want to go there yet.  That next step is yet to be determined but I’m counting on the doctors to be The Cancer Whisperers, and I’m counting on them to make cancer to lay down and play dead.  And I’m counting on a really good outcome, where I get jewelry again at the end of it.

AND I’M COUNTING ON YOUR PRAYERS!

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The Man Who Has Everything

IMG_0879Well, Christmas is almost here and I still don’t have a gift for Steven nailed down. What do you get for the man who has everything?

When Steven really wants something he usually gets it. I don’t mean that in a real spoiled-y husband kind of way! It’s just that his wants are so few, that when there is something special that he has his eye on, one of us usually makes it happen – thus making it very hard for me when a special occasion arises like a birthday, an anniversary or Christmas, to hit a homerun as wife of the year in the gift department.

So this year I thought I was really going to kill it! What do you get for the man who has everything including…lymphoma? You get him a bone marrow transplant! I know that might not seem like something really dandy to most people but trust me, when you need one it’s the gift that keeps on giving! The bad thing is a bone marrow transplant is just like the latest and greatest toy. It’s really hard to get around the holidays.

All this past week, Dr. Sprawls’ staff has been trying to get Steven an appointment with the renowned Dr. Lynch at Shands medical center in Gainesville. They still haven’t been able to make it happen because of the end of year festivities that everyone else is enjoying. Add to that the little wrinkle that all Americans who work for a living know. “Use it or lose” it on vacation days is the status quo. In medical offices throughout the land, no one is sitting in their usual chair. The ins and outs of running an office have become a mumbo-jumbo of people trying to fake their way through the day in order to cover all the vacationing spots!

Getting the appointment is only the beginning of my woe. I really hate to be thinking of a bone marrow transplant as the Cabbage Patch doll of my current life, but it looks like that’s what it’s become. Not only am I having trouble getting one before Christmas, but I’m gonna pay through the nose for this little baby whenever it passes by. We met our “out of pocket” insurance for this year, but if this transplant nonsense starts at the beginning of 2015, I am screwed. The insurance game makes overnight shipping charges seem like gum ball money!

So for the holiday season we’ll be sitting by the phone awaiting the next phase of treatment…and probably scrounging the sofa for spare change. But no matter what comes next, we’re both glad I didn’t settle on getting him a tie.

Bee Tee Dubs. This post comes to you from the keypad of my iPhone 6. How current am I?

Well, Helloooooooo 2014

ImageHave you missed me?  I sure as hell have missed you!  I really miss the writing, I really miss knowing that you’re reading and I absolutely miss having the time to do it.  My stupid, freakin’ job has been taking up all my time and I just haven’t been able to figure out where to grab a few minutes to chat with you!  (Issues with the job?  We’ll be addressing that in 2014!)

News on Steven is great.  We really expected that he was going to need chemo in January, but he aced allImage his tests and Dr. Sprawls sent him home with a, “Keep up the good work,” and “You don’t need treatment yet,” as a Christmas present.  It seems like the weight loss, exercise, good nutrition and supplements have been a winning combination.  So I hope that gives hope to anyone with any kind of illness or disease.  Apparently taking good care of yourself helps!  (Care and feeding of the human body…another thing to address in 2014)

I’m trying not to beat myself up about my absence from blogging.  I get beat up enough at the old job site.  I travel 76 miles to work…and then another 76 miles home every day.  I have taken to spending at least one night a week in Orlando with Alexis.  Her hubby works late once a week so we have a girls night sleepover without disturbing the menfolk.  And it’s nice to spend quality time with my baby girl.  Although I do hate to leave Steven alone with the girl dogs.  He spoils them because I’m not around to spoil, and now I can’t eat a peanut butter sandwich without a 30 MPH incoming Whippet jumping on my head!  I can’t even imagine what the hell is going on while I’m away, but I’m going to get whiplash one of these days.  (Dog Whispering 101 – another 2014 topic)

So it looks like there’s much to chat about this year and that’s why I’m back.  I’m weighing in on Obama-care right now.  I really don’t know who gets “care” out of it, but it ain’t us!  Our new insurance through my employer costs $20 less per month than when the grown-ups were in charge of healthcare.  But so far this year, Steven’s prescription meds that used to cost $15 now cost $75, the $30 script ran us $95 and the $7 Neurontin is being delivered for the low, low price of $65.  If I do Republican math, I’m already screwed out of the $20 a month premium savings and it’s still January!  If I do Obama-math I think I just paid for a crack whore’s syphilis meds!  If I’m sounding a little angry, I am.  I now have hemorrhoids from sitting in the car over 3 hours every day so I have a job…to have insurance…that costs so much that I can’t afford hemorrhoid balm!  So expect a little more bitching in 2014…which is part of the beauty of being me!

But, at least I’m here to bitch.  And so is Steven, and the Whippet girls, and The Newly Married Alexis girl, and the New Son-In-Law Matt..and as always my beautiful grand-dog Coda…the poopie dog.  She’s loves me so much that I make her crap.

I hope you’re that happy to have me back.  I’m going to make a concerted effort to post…weekly.  There, it’s written in the sand…and if you want to show me you love me, crap on it!