Monday, July 21, 2014

You Want the Truth?

I am going to lose readers over this post. What I am about to write.  I don't really believe any Tadpole is going anywhere, but if you wish, then I will understand.  No harm, no foul and no hard feelings.  I deserve whatever comes from posting this.

I also know I am going to receive some random emails and comments from people that read me often but don't comment [but love to email me, what is up with that? I don't mind, really, but...um, weird?] - this post is going to pull them out the woodwork and I am ready for the attack.

After this week?  I am pretty sure anything y'all sling at me is going to be cupcakes With pretty icing and sprinkles

Have at it.

So?  Here we go.

I won't time line this because that is boring as sh*t - but to do this in a one-two-three [and four! yes there is a four]  fashion...here is what is going on, in succinct fashion.

Well, succinct for me. Get snacks.

Initially we were told I had Lupus, which it turns out I don't have [they THINK]...but I do have a sucky ticker.  Meaning? I was diagnosed with Congestive Heart Failure. We'll get back to the Lupus misdiagnosis in a few, but bear with me because the CHF happened first.

Let's visit how fun that was/is/always will be, shall we?  It means my heart does not pump to the capacity yours [you healthy bitches you] does - and works extra hard anytime I do ANYTHING.  Stairs, bend over to get a pan out of the cabinet, raise my arms to take a shower, drive my beloved Ozcarz.  Oh hell, I am pretty sure picking flowers would congest my heart at this point. I spend more time spitting ....well never mind that.

They told me 4 years ago that a heart transplant would be a good option because I am so young and the damage had been done to my heart was enough to warrant a transplant.

Anyone want to ask why the damage had been done? No?  That's Okay....let me tell you....

I have had anemia my whole life. And not the run of the mill "Oh I am having my cycle and I have lost that blood"  This is severe anemia - to the point I have had several blood transfusions, including one to save Evie's life while I was a week from giving birth to her [my life too, but let's focus Janine, shall we?]

I was told time, after time and time and again "We simply don't know why you suffer from this and we can't fix it."  Meanwhile...my heart was working overtime to make up for the lack of iron in my blood and dingdingding - BAM - my heart failed.  We just didn't know it. For years.  And you know what? Don't argue with me. . .this is what happened.

Okay, moving on.....two years after THAT skippy little diagnosis, I was told my liver was shutting down. I was hospitalized for 7 days for that fun rodeo while they tried to figure out what the hell happened. Considering I don't have hepatitis, don't abuse drugs or alcohol and gee.....those blood transfusions couldn't be corrupt, COULD THEY?

Nah - turns out it's a whole other thing - but the transplant I am actually waiting on, IS my liver.   Which can be done by live donor.  Which means anyone who has my blood type and wants to go through the pain and bad hospital food can donate to me.

HOWEVER.  And y'all had best listen to me - I never told this story before because I know you Tadpoles. I would have [partial] livers lined up on my doorstep, because you are that way. Heck. I am that way...except I don't think anyone really wants "Larry" [yes, I named my liver. I figure he is giving me such sh*t he deserves a name.  And "Larry the Liver" has such a ring dontcha' think?]

I love you all so much for all that you give me and offer, but this?  Let's just pretend it doesn't exist, okay?

Oh, wait...it gets better [laughing here!] no I don't have Lupus [they think] but all of my tests [blood and x ray] explain the pain I fight everyday as advanced rheumatoid arthritis. Which is JUST the most SPECTACULAR, TICKLEY DISEASE EVER!!!!, I will have you know.

And the sarcasm drips down the screen.

Holy hell.  THIS? On top of the fatigue and the breathing and the whole "Great car Skip but you are too busy barfing into the sink to drive, how's this working out" thing....

RA SUCKS.

I can't even begin to explain how bad this hurts. I read back through this blog and realize how many years things were so bad and I was never diagnosed.

I have been in pain for years.  I am not going to talk about the failure that are the meds they prescribe or won't prescribe to me for this pain.

This is absolutely unimaginable to me.  I wonder everyday what the hell I did so horribly to have to put up with it all.  Is this the price I pay for wonderful kids, a great husband and still being alive?

I am terrified at how bad this going to become in the future. I re read over my posts from the past years and I shake my head, wondering how everyone missed this [doctors] , but Sunday?  Today?

I could not walk down the hall.  To go to the bathroom.  The combination of everything is just too much.

I am sitting in a padded chair, too scared to go to bed because I know how bad it will hurt.  And that sounds simple [simply stupid?] to you Tadpoles, but it isn't to me.  It hurts being alive at this point and all I want to do is sleep, oh. . . .sleep, the idea of it, the beauty. . .. yet - not within my reach.

I honestly pray for death some days.  And there is the truth I don't think you all can handle. I shouldn't be that selfish, when so many have it worse. And what about the kids? Steven?

Sorry if it isn't Skippy enough for you or you see me playing so nice on FB, but if you had the days I have had you might' be  praying for death too.  The only difference is I have been in this pain for years. And lying about it.

I will do my best to post a happier post soon. This isn't the Skippy you like. I know that.

But I warned ya'.  Sorry about it all. [and look at me, apologizing and stuffz.]

See ya' on the flipside.


Saturday, July 19, 2014

Not the Best Feeling In the World

Remember the peach pie I posted about a few day ago?

My favorite pie?  I eat very little Mostly in an effort to not hock up food I love and then not desire it again because anything you throw up after eating really isn't all that attractive the next time around.

The peach pie.

I made it.  Had one small slice and {bravo for me] held it down.

And then it sat in the fridge for a few days during our pseudo vacation.

Tonight Steven decided to reheat it in the oven [no, we do not own a microwave] without benefit of cover [think tinfoil, etc.]  It is almost an entire, homemade pie.  That is going to be ruined by reheating in that fashion.  But I have to keep my mouth shut.

So, there's that.

Would someone like to remind me why I even bother with this sh*t anymore?

Two Out of Three Ain't Bad

My husband surprised me with an anniversary present.  We don't exchange presents, but the JMU sticker showed up in the mail a few days ago.  I know how much you Tadpoles love my husband - and yes, he is a great guy - so please, a resounding chorus of "awwwwww" s is okay ::rolling my eyes:: giggle

Why are the stickers important?  Read here:  Noonish? Who said Noon. [I know you guys remember that is just for someone swimmin' by and reading this post first.]

The Vikings sticker is from a dear friend and fellow Vikings fan [honestly? She sucked me into that fandom and I am loving it. hee] That is the "special" sticker I was talking about when I went out to the car to put it on and saw the girls' stickers were gone because of the accident.

I can't replace the Titans band sticker because Evie no longer goes to that school, but I can probably find an OCHS sticker to go in the other corner. It does look a little incomplete in the meantime, and that makes me a little sad. But it's a stupid thing to be sad about.  It's just a sticker.

In other news...since my driving days are nearing an end, we have decided to give Ozcarz to Evie for her 17th birthday.  We are ordering plates with her name [nickname] on them, and giving her a set of keys.  She prefers driving him over our mini van [you think?]  but there's really no reason for me to have him as my car as she will be driving it all the time.

And then?  All the stickers come off.

So who knows why this is even making a difference in my life right now.





Thursday, July 17, 2014

Day #4 of Vacation

We are doing nothing. Steven and me, that is.

The girls are at an amusement park in VA.

Meanwhile I am back in the house, staring at white walls and watching my husband watch the British Open.

Sorry.  I am doing bitter really well today.

OH WAIT - BONUS! I get to make lunch and dinner too! WOOHOO.

And drive back 1 1/2 hours to pick them up. Then drive back.

This "last vacation" is working out so well, dontcha' think?


We're Sorta on Vacation. . .with Pie

Give me any excuse to make pie and I will.

To wit:
Add in the fact that is my grandmother's rolling pin I used [unearthed that in the "Great Yard Sale" hunt] on the bottom rung, and the pie is peach.

My favorite pie.

Oh, and I made homemade pizza too.  So, yep. . .vacation, at home, for everyone, but Mom.

Whatever.

The yardsale went great. We met super, dooper nice people [with the exception of one shrew who is getting her own post because really? Don't lie to me. I will vilify you on the interwebs semi anonymously] AND we made $500..

Unfortunately that wasn't enough to get us to the toes in the sand scenario I wanted for the family.

Here we are. Stuck in Virginia. And before anyone mentions the stupid word "staycation" to me, remember I have lived here for 43 years, my husband 50 years and our kids their whole lives. We have seen it, done it and bought the postcards.

But, as usual, we are making the best of it. What else are we going to do?  It's nice to want something, but I am a firm believer in you only get what you need.  In my case anyway - and then it's the bare minimum.

I don't mind.  Really.  I am still here. That's the most important thing, right?  Just another day for the doctors to give me a new toe tag and big Pharma to steal our money!!! WOOHOO!"

Yeah, I don't do bitter really well, do I? giggle And I'm not. Bitter, that is.  Honestly. I am just tired.  And what's new about that?

Supposedly the girls are going to an amusement park tomorrow and Steven has a plan that involves wheeling me around somewhere in this godforsaken state in my wheelchair, ending with a picnic.

Funny thing is?  I planned the whole damn thing, yet on FB he gets all the credit. [He took it, but I didn't help on FB either]

Just a few more bucks and I wouldn't have had to be the master planner of anything.

Who am I kidding?  At least I would have had the nice backdrop of the sea air and the sound of the ocean while I orchestrated the beach trip.

Here?  I am still cooking, cleaning, taking care of the dog and enjoying what few pleasures I can, like peach pie and playing a card game, while I fake not being in pain and throwing up outside in the early morning hours so the kids and Steven can't hear me.

It's going to be really interesting when I don't try so hard next week. Don't you think they are going to wonder how I did "so well" for a week?  And it's hell hiding this - but who wants to ruin someone else's vacation?

WANTED: Martyr
No one need apply. Position has been filled.


Thursday, July 10, 2014

We Have Made a Decision

I just hope we can pull it off.

And, no. . .we are not robbing a bank.

We have decided to have a yard sale.  Perhaps, we're thinking, we can raise enough money to get somewhere out of this state for a few days.

Found this little gem today. My Dad's 1938 Erector Set

I don't do yard sales well. I know all the rules and how to price and blah, blah, blah - but the  few I have held for my parents sucked. Because the people suck. Can't wait to hear the comments on that statement.

I do love to go to yard sales and when I go I am always polite and respectful and if the price is reasonable I won't barter. I don't mind people bartering at my yard sale, but I am no good at it. I won't even ask.  I think it goes back to the one and only time I tried to get a lower price on our washer and dryer and the little woman shot me down like the Red Baron.

Some things I have found while running a yard sale:
- People are insulting, thinking they are going to get a lower price.  "Oh this old thing? I can get that for pennies new."  Honey, that is a Longaberger basket and no one can get that for pennies anywhere.
- People steal/shoplift.  This is probably what makes me the most likely to scream "Citizen's Arrest".  I have seen people pick up clothing, purses and hats, put them on and walk off towards their car. When we did catch up to them, in every single case, they pretended not to speak English, but did hand back the merchandise with a shrug. No real chance of this happening here, considering [the not speaking English part] but. . .
-People who pay in pennies.  They think if they are wasting your time you'll just stop them and let them go at $7.80, instead of the $10.50 they owe. Nope. I have all the time in the world and you just paid for a set of books with a 20 bill. You have change. But pennies spend. . .keep counting sweetie.
-People who try to pay by check. NO.
-Kids who aren't supervised and actually break the stuff for sale. I don't mind them trying out the stuff, but really kid?  Why are you touching a glass vase? Planning on buying flowers for your kindergarten teacher? Put it down. But heaven forbid you say anything to the little dumpling, 'cause Momma will come over and give you what for because you interrupted her important decision between a .50 Harry Potter DVD and a whisk. "Don't talk to my child." Why don't you? No works.  So up went a sign "You break, you buy. Price asked, no bartering."
-People who want to go in the house/people you find in your house.  I grew weary of this scenario during the first yard sale - "So what do you have in the house? Think I could have a look around?" NO. It's a YARD SALE, see the grass?  My brother and I roped the house off and posted signs that said there was nothing available in the house. Sigh.

What else have I forgotten erased from my memory?

There will be a lot of history and memories going, but that's okay because I am not so much attached to stuff as I am to my family - and no I am not selling anything the kids want to keep or belongs to them, this is specifically my stuff that just doesn't mean that much to me or I can't use anymore [sewing machine anyone? I have three! :D  ] and some larger furniture we can live without. How did I end up with three armoires? giggle  The things are hard to move. So, out go two of them. One is my Grandma's, that stays.

But if this is what I have to do to make this happen, then so be it.

And before anyone screams "Avoidance" to me - I remember specifically asking you not to question what we do with our children. Well, that took three days.  Anyhoodle - I know I have to tell them if we can't pull this off but I thought I was pretty clear that our older daughter is still at school - which leaves her younger sister home alone. What do you suggest, I call Emily at school and break the news on the phone? Or do I  tell Evelyn, here at home, who is incredibly close to her sister and let her suffer while we wait to pick up Em?

I am not a dink - I know they have to be told. But I am certainly not going to break a heart by phone. Or leave our littlest alone, knowing the news without the ability to share it with her sister.

If you had any idea how excited the family was the I was willing to risk a long car ride and a bed not my own, hours from my doctors and hospital - then I think you would better appreciate what THIS vacation means to them. To me.

And for those that emailed and mentioned that there will be other vacations?  Well, you seem to not understand why I stopped this blog in October or why when I came back I told ya' all that it wasn't good.  Sorry that you missed that, but I know, my husband knows and my kids know, this may well be our last one together.

They live in this house everyday with me. The rest of the world doesn't.

I realize I am pretty damn upbeat and happy in internetland, and for the most part I am. But, what would you prefer? I be Janinie Downer everyday?

You all know how much I appreciate and love you, but I guess I am just not clear enough. Am I?

Have a great Thursday. In the best way you know how.




Wednesday, July 9, 2014

I Don't Think This is Working Out So Well

I am sitting here today listening to my two youngest daughters chatter on the phone about going to get their nails done and buy new bathing suits at Victoria's Secret for our vacation. Emily's treat.

A vacation they don't realize ISN'T going to happen.

Because of me.
And I can't stop crying.

Any of you who have read this for a long time, know how shitty this last half a decade has been, with my health, losing the house, temp living, finding a new home, the heinous commute for Steven [4 hours a day?] - oh, freaking name it - it's happened.

The one thing my family, in 19 years, has only done once is go on vacation to a place we chose and paid for, in 2009: we went camping at the beach, how cheap can you get? because we are usually given family vacation homes to use for free.  Not to say we have been on 19 vacations in that time, but we had Steven's parents home in the country and my parents' golf condo in Longs SC.

My parents are gone and now we live 20 minutes from the country house. We LIVE here. So, not a vacation.

Don't get me wrong - it was a great gift. We were very blessed.

We face medical bills, with insurance, that would curl your toes.  Still, we always manage.  My health sucks and I live month to month. Not being morose, but I do.  When I thought I was making it to summer this year - I started to save again.

I shouldn't have bothered.

We found out last week that the medication that is keeping me alive until my transplant - a med that is made by one company, no generics, I have to have it - went from $80 to $1,455.00

Any guesses on how much I had saved for vacation?

I argued with Steven. Told him I wasn't going to give up this vacation - the one I promised him and the girls - to take that stupid med.  The pharmaceutical company is being greedy.

As, I guess I am, because I WANT this vacation.  To see the excitement on the kids' faces and in their voices - my kids, who are GOOD KIDS, who don't complain, who work hard, don't give us a lick of trouble - who put up with me and help me. They worry about me.  To give them this.

Steven, and my doctor, insisted a month without taking it would make a difference. We had to get most of our deposit back [in fairness, wouldn't give it all] from the rental and give the rest of our spending money saved, to buy a month of the meds.  We have made arrangements for the future for this stupid med, but for now we are out $1,455.00

And still I cry. Because I simply can't tell them. Could you?  We are supposed to leave Sunday for 6 days. Emily is still at college, so I don't want to tell her via phone - and how can I face Evelyn?

Next week is the only week Steven and Emily can get off from their work and her school.

I don't know what to do, except sit here and cry.

I never thought ANYTHING could hurt this bad.

I am tired of being thankful for being alive or having it "better" than so many others.  We are good people. We are fair, honest, hardworking and I didn't make myself sick.  Yet, everyone is trying to take it away from us.

I am in pain every single minute of everyday. I spend half my days throwing up. They spend all their days worrying about me no matter how happy I hide it.

Why in the hell is it so wrong to just want a week at the beach, in a run down motel - believe me I found the most inexpensive place I could find - and we're not going to eat out? I just wanted to spend six days with our toes in the sand, watching them smile.
This is the type of  motel.  It's actually my kind of place....sigh.


WHY CAN'T I HAVE IT?