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?




15 comments:

Anonymous said...

What kind of transplant are you waiting for?
My husband is fourteen years post Heart transplant...

We have been there and life goes on.. the gift of life is an amazing medical success story.
Let me know if you have any questions about it....

Juli said...

*sigh*

You do deserve it Skip... you really do. But as for the girls, you gotta rip the band aid off darlin'. Maybe have Steven rip it off? (I know... horrible) Who knows, maybe they can put their heads together and come up with another vacation idea that will be better.

I could say all kinds of positive things here, but you know my heart already feels them for you. And normally this is where I'd insert some kind of snarky comment to make you smile, but as you know I too was looking to stick my feet in the sand today for some salt water therapy. (I'm getting the pond... SO NOT THE SAME... but the kids are getting friends out of it and I'm getting some girl time, so beggars can't be choosers)

*sigh*

I could send you some sand...

Diane Laney Fitzpatrick said...

Allow me to be the one to bring you out of the bottomless pit and up to the bright side:

1. There will be other vacations. No one's going anywhere anytime soon. This isn't a once-in-a-lifetime opportunity.

2. The longer you wait to tell them, the worse it's going to be. Not for them - they're reaction will be far, far less dramatic and negative than you imagine, no matter when or how you tell them. But the more you wait, the more this is going to kill you.

3. You're doing the right thing, obviously, so stop beating yourself up. If you chose to go on the ridiculous vacation and skip the medicine, you'd have reason to feel like shit. But you're not doing that, so you shouldn't.

4. Here's your chance to be creative. Re-create a beach vacation at home. If anyone has the ability to wow her family with something like that, you do. And then write a book about it.

Juli said...

Here's an idea....

http://moderndecorho.me/2014/04/07/backyard-idea-adventure-time-adventure-ideaz/

(Sorry, it wouldn't let me put in the picture.)

Anonymous said...

Just give me the word and I can have a Just Go Fund Me Page up tonight and you would have the money by the weekend!

PLEASE let me help you! :D

Hugs and Love,

Biz

Juli said...

Biz... I was just thinking the same thing. PLEASE Skip... with ice cream and sugar on top... with sangria in the other hand???

Gypsy said...

I agree you should tell the girls it isn't going to happen at least right now. I don't know of any halfway loving family who would need to consider the choice - vacation or mother's well-being, and you are way more than a halfway loving family. Don't underestimate your kids, and don't blame yourself for something you have no choice in. You just have to trust that everything works for the best if you "go with the flow".

SkippyMom said...

I appreciate everyone's comments about telling the girls, and how they will understand. I DO realize this.

The sadness comes from taking something away from them again because of MY health. I AM going to tell them, but really?

Through no fault of our own, we are cancelling a vacation we should be able to take. It doesn't mitigate how bad this hurts and how much it is going to hurt THEM.

Thank you for your lovely comments, but I am NOT telling Emily over the phone, and we don't see her until Saturday - and I am not telling Evelyn until her sister is here.

CWMartin said...

:(

Juli said...

For what it's worth, I DO get it... all of it (as much as I can anyway.)

And I'll bring you beach sand when I come in August.

(((HUGS)))

Southhamsdarling said...

I totally agree with Biz and Juli, and I did suggest this to you before about the Just Giving page, my dear friend. I've read all the other comments and I know that people are trying to lift you up. I'm not able to do that this time, because I know how long you have been excited about this vacation for your beautiful family. You're hurting and I can fully understand that. Deep down , you know that your girls will be okay, but you are SO disappointed for them - for you all. Life really does suck for you at the moment and it hurts. All I can do is to pray for better times ahead for you , and pray that that transplant may be carried out very soon. Miracles can happen dear Skippy, and I certainly pray for one for you. Love and hugs to you xx

Susan Flett Swiderski said...

I'm really sorry you have to go through this, sweetie. (BAD insurance company!) 12:34

Heather said...

just food for thought..it's a great idea to help fund, if Skippy would let us, but Go fund me (I was told by a friend) takes 5 - 7 days to withdraw monies, even for bank transfers. And it needs to be known they keep 8%. We could do free transfers if she would be willing to set up a paypal account and the money is available within 24 hours on business days.

Teresa said...

:( My heart hurts for you all. I totally get where you're coming from. Medicine should not have to cost that much and you should not have to choose one over the other. Been there, done that, not fun. I don't think any of Ron's were quite that much out-of-pocket (some were close, but you got us beat). Our biggest problem with his co-pays were the sheer number of them.

If someone posts a 'raising funds' page, I'd love to donate. Really. For sure. Any time. Just tell me where. Love and hugs.

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