Friday, June 29, 2012

I think I wrote a post like this once... Being diagnosed with lupus.

Well, it's finally official. For six years, I've been ill with some sort of auto-immune disease but my doctor could never pinpoint what exactly I had. In 2008, I felt so much better and I quit going to her because whatever it was had gone away and I was FREE!! Until December of 2011 and I fell off the cliff, figuratively speaking of course, LOL!

I went back to rheumatologist and saw the PA this week. I asked about my labs and she said that I still had active lupus.

STILL HAD LUPUS????? WTF??? WHEN HAD I BEEN DIAGNOSED WITH LUPUS?????? I was flabbergasted. I asked her what she meant and she told me that when I came back in December of 2011 that the blood tests showed positive for an indicator of lupus and combined with my other symptoms, they could definitively diagnose me with this.

So the last two visits with my doctor, nothing had been mentioned but I was so disbelieving, the PA showed me in the doctor's notes where it said I had been diagnosed with SLE, not RA as originally discussed nor scleroderma with CREST.

The last couple of days have been a rollercoaster and I'm still dealing with it. I've been angry and weepy. It's really frightening. But really everything makes sense.

So this is my big announcement and a bit of an explanation. I love to be around people and hang out but this disease can take a lot out of me. The way I feel is often too complex to describe and it can change from day to day. But I've often used The Spoon Theory in explaining how I've felt and all too often, I've borrowed spoons from the next day.

So if I bow out of anything, I apologize in advance. I make plans and then have to break them because I'm so sick. Today, I'm running a fever and my joints ache. So ask me today and I don't feel like doing anything. But next week is different and I hope I feel better :)

Monday, June 18, 2012

Wow, I can't un-hear that! LOL! My trip to hell and back... Part 2

First four days can be found here

Day 5: Jamaica, my breakdown and my obsession with the ice show.

Well tomorrow, another early morning. I was so damn frustrated at this point, I was in tears. I called down and asked to speak to the guest services manager to see if maintenance could come up and look at the door. I was told they were busy.

Maintenance showed up at about 8am and I said everyone is asleep, please come back. I go down for breakfast after my husband's hot water for tea shows up. After all that, I try to come back and sleep but I'm unable to.

I let our stateroom attendant (who was just a total doll) know we are expecting maintenance. We go down for lunch and on the way, we managed to speak to the guest services manager, who manages the guests experience for the hotel rooms. I let her know my frustrations about the noise and how we can't seem to get a handle on it. It's horrible.

She manages to get us another room on the way other side of the ship. It's a smaller room, not the same category but it's the best she can do because the Tony Award tech guys just left the ship (sorry to hear that! I wanted to see them grinding on each other again ;))

Anyway, I take the room and after lunch we move. The room hasn't been cleaned but I take off for a bit and come back and the room is all made up. The stateroom attendant is kind of a noob but he cleans the room well enough. There's not enough room for my wheelchair either. I DON'T CARE!

Dinner that night was lovely. I couldn't tell you what it was. It was just delicious! :D

Steph has become a winning machine with the 21 table while Dad and I head off for this free machine that let's you play heads up Poker. I sit down for a tourney with my dad and I win! I consider this to be a honor because he's a long time poker player and he's won quite a few tournaments. He has a bunch of t-shirts from winning :)

I go to bed early and sleep for 13 hours. Thank god!

Day 6: Cruising.

Honestly, this day was all about watching the water go by and just chillaxing. I take a nap and write on and off all day, just enjoying myself. I also go for a seminar at the health spa about the benefits of chinese medicine for arthritis and auto-immune. I'm totally fascinated  by the benefits and decide to look into this when I get back from the cruise.

I have a great talk with my dad about business over lunch and where we are going with marketing and product development. I finally convince him to sign off on a couple ideas I have that I think will drive our business into the next level and I'm excited to implement them.

Dinner tonight is so totally awesome! Shrimp and lobster for the win! It's also the Captain's dinner so who is driving the boat? :D

At dinner, Steph and Helene start talking about the diving show they were watching while I was at the chinese medicine seminar. Helene said "Steph liked this one guy who had perfect gorgeous abs." And on this trip, I can definitely see my baby sister has grown up.

So Helene is trying to describe him to me and she says his thighs look like big hams to her.  I couldn't hold back my laughter and while us girls are all snickering, my dad pops up and says "Well, all those guys with perfect bodies have little dicks."

My mouth dropped open as did my little sister and my step-mother. My dad rarely swears and I just couldn't unhear that.

After dinner, we go to the Casino and I can't get over the fact that the James Bond theme plays on a loop as you walk in but we find my hubby there chatting with a fellow Scouser (from Liverpool) and I mentioned it was the captain's dinner so I asked who's driving the boat? The dealer said, "Don't know but we might hit an iceberg." Hubby said, "Too soon, mate." and they both laughed. Only Scousers could joke about that :P

So I play against my dad on the poker machine, because he can't believe I won. He wins this round with three kings against two pair. I let him crow about it for a while before we hit the craps table.

I stood by the table, explaining the bets to my hubby while the dice rolled. My dad showed up and he convinced us to play while he taught my husband. While I can explain the basics, my dad has been playing craps longer than I've been alive. When the guy next to me crapped out, the dice came to me and we bought some chips so I could roll.

And I hit a roll that would not stop. The cheering from the table when I hit points and elevens was heard throughout the casino. People bought in and played the come line as I hit number after number. For some reason though, I couldn't hit a hard eight, which was my mom's number. I tried though until I hit a seven finally and the dice moved on. You know it's a good roll when people cheer and shake your hand.

Then my dad crapped out pretty quickly and then on to my husband who hit some beginner's luck. And then he hit a hard eight. I took it as a sign my mom was watching over him, because she always loved my husband :)

We walked away from the table when our rolls were done and they shook Damian's hand. We had some good bank on that roll. We didn't play roulette because my husband said it was mental.

Anyway, I drag Steph off the machine and we head for the ice show. I snag a couple boss seats and I can't get that song out of my head. I tape the song so I can shazam it later and figure out what it is. I know I've heard it. I just can't name it.

I'm exhausted so I hit the bed early.

Day 7: Cozumel; my luck ran out and my computer world fully collapses. 

This morning, I'm up early and feeling great! I head up for breakfast and write a bunch, finally ending up on the Solarium deck and sitting in the sunshine while banging away at my keyboard. Some towel guy tried to tell me a joke but unless your name was Drake or Robbie, I wasn't listening.

I really feel lazy just laying around and eating whenever the buffet is open but honestly that ship was so big, after I lost the water bloat, I'm five pounds less than when I started the cruise. There was just so much walking. 

Anyway, I make a huge salad for myself, piled high with feta cheese. I take the first table I could find and go get a glass of water. I nom on my salad, which taste sooooo good. I get up to get another glass of water, trying to decide between plain water and enhanced water, which taste like crap. 

When I get back, there's a glass of soda next to my computer, which is weird but since I'm in the same cafe my waiter manages, I figured he just told someone to get me a soda but I don't feel like one. I finish my salad and start to work on my story and suddenly this old guy shows up and tells me I'm at his table. 

Now, I've been there with my computer for fifteen minutes and my server is confused because she didn't seat him there. Anyway he tries to bully me into leaving but I'm done with my food anyway. I should have stayed there to screw with him but I was in a mood to write so I just left after telling him he was an asshole. 

So I hung out at a different table that my waiter found for me that looked out over the water. The buffet area is so huge it stretches from port to starboard and about 1/3 of the ship. As I'm eating, a Carnival ship docks near us and I took a picture of it. The Carnival ship is as long as our buffet area. We were parked in the opposite direction, aft (butt of the boat) in.

Our boat is bigger than yours. Neener. 

So you see my theme, which is much like when I'm at home. I escape to write. While on vacation, I would get up and while my family slept in, I wrote over breakfast. If they managed to find me, I put away my story but for the most part, I hid out. Our evening waiter on the cruise was the manager of the breakfast buffet and every morning, he created this little space where I wouldn't be disturbed by the other cruisers and I still had a great view. I was almost done with my story and started re-writing the beginning by this day.

Cozumel is really hot so instead of getting off the ship, I just head to my room and nap for three hours. After that I wake up and get ready for dinner.

Dinner that night isn't supposed to be anything special so Hubby and I go off in search of something awesome. We hit this place called the Seafood Shack on the Boardwalk and as we are eating, we set sail. I had two grilled lobster (frozen so I have no problem with the seafood allergy) and we leave but I'm thinking we're supposed to be in Ft Lauderdale the next day but we have one more day of cruising.

I'm ready to be home. I'm tired of cruising. Seven days is just wayyyyyyy too long. I'm tired of walking this ship. My back, thighs, knees and feet hurt like a bitch. So I head back to my cabin to look over what to do tomorrow and I decide one more day at sea won't be too bad.

After dinner, I get back and my computer is on the floor. I NEVER leave my computer on the floor. It's just too dangerous for it down there. But I decide to use hubby's computer because my wireless is just not working the last couple days. It's driving me nuts but apparently it's a ship wide problem, not just my computer. My hubby has a gaming laptop so it has a super strong wireless signal.

The whole cruise, I can't seem to get on the internet. I'm an avid dropbox user but because of the wonky internet on the ship, I couldn't seem to back-up like I thought and all I can do is pray my computer doesn't do anything strange because I can't back-up my story. 

Sure enough, my computer went nuts. When I took it downstairs to get some writing done, it kept shutting off every time I turned it on, like the battery was dead. I thought that was weird so I plugged it in and it still does the strange drama. So I do what any good CEO does when their $3K computer goes on the fritz.

I cry.

Hubby calmed me down and assured me that I would be able to fix it when we got home, even if we had to send it in to Sony. I'm freaking out because I didn't think the last back-up worked because of the wonky internet and I was using a new program called Scrivener and I wasn't sure of how to back it up. So I checked Dropbox via my hubby's computer and there is no sign of my back-up, in fact the last back-up was three weeks ago, not even my back-up from when I left for the cruise.

WTF WTF WTF WTF WTF??!?!? I have a total full-blown panic attack but my hubby manages to calm me down. I love him so much because he kept a cool head and calmed me like he does with cats who freak out. He was like the zen master.

Too tired to think about it, I popped a Xanax (It's not actually Xanax but in that same family) and I hit the sack.

Day 8: In mourning of my lost computer. 

Blissfully, I slept in until 10am. I'm too upset to eat breakfast but I managed to have lunch. I e-mailed my CP and cried on her shoulder (thanks Kele) 

Not even the ice show could cheer me up and dinner tasted like ash. I had full on depression. But I decided that if I couldn't get my story back, it was because it wouldn't work anyway and I just needed to toss it. The universe was trying to tell me something.

OMG! A towel monkey was in our room! ACK! 
Hubby had a Ron Stoppable moment. :D

I spent the evening indulging in my packing OCD to keep my mind off my computer. This apparently fascinates my husband because I made all our clothes fit into one suitcase when we brought three. I'm magical like that :)

So as we packed to go home, I handed my husband my computer and said "I don't care what you do. Move mountains or do some voodoo but make this thing work. Save my story! But if we have to, we'll send it into Sony." I didn't want to do the last because they would probably erase my hard drive.

While I packed, hubby bonded with my sister. They are so alike, it's hard to believe they aren't twins. I'm glad they got to hang out :)

While hubby has no trouble getting to sleep, I can't night because I'm so eager to get home. About 3am I fell asleep.

Day 9: I'm on solid ground but the earth is still moving.

I'm shot out when I wake-up at 5:30 but I have a very early brekkie with my husband and see him off for the early train back to Orlando. Again, from the beginning of the story, he hates traveling by car.

If you ever get a chance to cruise out of Ft Lauderdale, do it. Getting off the boat and going through customs is so organized and easy, with a snap of our fingers, we were done and getting in our car for our trip home.

The drive home was fraught with worry, I was sure I would give myself an ulcer. My hubby got home before I did and the house was hot but he sat down with a cup of tea and called Sony.

When I got home, he handed me the computer and told me it was fixed. And it was! Something inside had become dislodged and he fixed it so it's working perfectly with all files intact! YAAY! Hubby for the win! He's my knight in shining armor and my hero!!!!!!

So I hugged him and cried tears of joy. He makes my world turn because he calms me when I'm freaking out and carries me through the hardest times of my life. I'm lucky to have found him and I can never say that enough.

The final stop? I pick up my babies at the kennel and everyone there was sorry to see them go. What I love about Best Friend's Pet Care at Disney is when I walk into the separate cat area, the cats never seem stressed or meowing to get out. They are always calm and happy. Although my babies did hear my voice and come out from under their blankie :D

So we're are home. I just finished the last load of laundry. My hubby didn't take enough shirts on the cruise but that wasn't a big deal. In unrelated news, my hubby tried a new skin wash, which gave him a nearly 2nd degree burn on his face right before the cruise. So he was feeling like shit the whole time but still managed to keep a brave face for me.

So I'm glad to be home and resting. I finally understand the whole needing a vacation from my vacation. I've woken up both mornings with my cats around me, purring their heads off. It's good to be home :)

More pics to come later!

Sunday, June 17, 2012

Setting Sail: My trip to hell and back... Part 1

Well I don't know if it was hell but it was certainly interesting...

Day 1: Fort Lauderdale

I'm starting with my day having to put my cats in the kennel. All the way over I'm really sad and I know I'm going to miss them terribly.

On the way to pick up my dad in Port St. Lucie(PSL), I drop my hubby off on the train to Ft Lauderdale. He hates riding in cars and there simply will not be enough room in the car with everyone's luggage.

So I head down to PSL. The day before, my doctor was out of the office so I needed to get an IV treatment on the road. The awesome National Pain Institute was terrific in accommodating me before going on my trip. I heart them so hard! :D

The IV made me so stoned, I couldn't drive. So my dad drove, which is the lesser of two evils. He's a good guy, just a jerky driver, so my head hurt because I tensed up so much after being so loose after the IV.

Anyway, we had a really nice business hotel in Ft Lauderdale that had a great great breakfast and a shuttle to the cruise terminal. It was completely hassle free except for the desk jumping out and biting both my husband and I in the middle of the night. It's dark and too far out in the slim area in the walkway between the wall. We woke up my sister in the middle of the disaster because we both did it one right after the other.

Day 2: Sail Away!!

OMG!!! I'm so excited that I'm rushing everyone out the door. We leave our car at the hotel and take a shuttle to the terminal. Because of my hip and knee pain, I need a wheelchair if I'll be standing for a while. (I'm hoping this clears up by GRL) So we grabbed a wheelchair at the Port and get checked in. After much picture taking for our cruise cards and passport checking (and of course credit card swiping) I'm wheeled onboard. YAY!!

Woo. Steph is staying with us too and we check out what's happening from our balcony. Here are some pictures of the view from our room.

Yes, that's a Boardwalk right beneath our room. (That's going to come into play later. Trust me.)

But the room is not important now. We meet our lovely cabin attendant who checks on my onboard wheelchair to make sure it's delivered before Hairspray. But we do some exploring while our bags are being delivered. We head to the buffet where Dad and Helene are already eating and my dad is already packing away the sugar-free cookies. 

We think the buffet is just not for us. So we head down to Johnny Rockets and have a burger. Yum! Delish! Hubby had a massive beer I think I posted on Twitter earlier. This beer was bigger than my head. O.O

Anyway, we get back to the room and our stuff is there. I unpack in a nice OCD fashion and everything is perfect! I hook up my power cord for my laptop and iPod and hubby's iPhone. And we're off for dinner. 

The view of Central Park from our floor. 

So we go down to Dinner and our waiter is a dear. He's from Jamaica and very personable, very helpful. He's had everything on the menu so he knows what to order. He didn't steer us wrong at all. The first night was delicious but we have to eat fast because we're going to Hairspray. 

Now, there was a problem with the wheelchair because I still didn't get it. And I really need it to get down to the theater because it's on the other side of the ship. I decide to tough it out but my legs almost gave out. 

After being 45 minutes later, it finally opens and yay! We're seated.

So my pain level hits a new high halfway through the show, but they are really fabulous so I stick it out. Loved it.

I get back to the room and oh thank god, my wheelchair is here. But the music outside the room is really loud from the boardwalk. When I turned the TV on, I can't even hear it. I complain to the front desk but they said it's normal.

About 1am, the noise stops. I figure I can sleep in and be okay. :)

Day 3: At Sea

8am. I'm wide awake. Shit.

Well, since I can't go back to sleep, I get up and Steph is awake too. We head down to brekkie. I'm surprised Steph is coherent but she is :) anyway, we discuss politics and how Democrats need to grow a pair and stand up to Republicans. Blah blah blah. We head back upstairs and find Hubby is just waking up. The noise from the Boardwalk is just starting. I'm hoping for a break in the noise so I can nap and adjust my schedule.

But the noise just doesn't stop. I complain again. I'm told again it's normal and no one else has complained. Well, I fucking am. I suggest there may be a problem with our door, can you come look at it. They say they will.

I decided to go explore the ship with Steph, Dad and Helene. This ship is massive. 17 floors, tons of balcony rooms, a central park and Royal Promenade that oddly reminds me  of Rapture from Bioshock. I kept thinking that one of the Big Daddys was going to step around a corner. Or I would see one of the Little Sisters running around.

I had lunch with Steph in the Japanese restaurant. It was delish! I ate all the edamame. :)

Anyway, one of the best parts was the Casino. Yes, this ship had the Casino Royale with the Trademark and everything. It was pretty sexy. And as you walk down the corridor, it loops the James Bond theme, which fucking cracked me up. I was dying.

Anyway, we change for our first formal night, which consisted of my regular dress with a Rolex added on. I could wear a burlap sack with that watch and everyone would think it's the latest fashion because of the watch :)

But before dinner, it's time for an ice skating show. Now, I was skeptical. I used to ice skate and I was thinking "Really? On a cruise ship?"

Frozen in Time blew me away! Here are some videos from a user on YouTube about it:

Steph and I were heckling the show a bit, especially the part when he put the red boots on the girl. I was snickering and then Steph piped up with "Aww, he found a girl to put his sparkle boots on."

The music from this number inspired me to re-write a scene in my latest work so back to the drawing board!

Anyway, dinner was fab. Back to Casino for Steph's first gambling experience. We all won and walked away with about three hundred bucks. Yay! :D

Tonight, Hairspray was broadcast to the Tony Awards from our ship! I didn't see it. Too busy running myself into the ground to do anything. I really needed an electric wheelchair

Get back up to the room. This time the noise didn't stop until 2:30am. I'm exhausted and I finally fall asleep.

Day 4: Haiti

I wake up as we are pulling into port early (like 7am). We're docked at sea and a tender takes you to shore. I decide not to go, not when I see how quiet the ship is. I sneak upstairs with my computer to write and eat breakfast and stare out into gorgeousness of this island.

In a sad way, it reminds me of when I was on a trip and we visited Venezuela way back in the day. As we approached Venezuela, it looked so beautiful with gorgeous green hills but we got closer, we saw the mud huts and the condos had no windows, except for one island where we visited. I remember thinking that town was made of gold compared to the rest of the country. It was gorgeous, even more beautiful that some of the nicest parts of town here in the US.

The contrast was heartbreaking. Severe poverty and extreme wealth all together. My mother was told to not let me out of her sight because I would be kidnapped as a blonde child and sold to one of the rich families. That shocked the hell out of me.

Haiti reminded me of that a bit because it was a remote part of the island. There wasn't a town nearby, just a private beach for our cruise line. The beauty and it translated into my story, the yawning canyon between beauty and darkness and how they can come together. I sat there for hours while I wrote. My waiter for dinner was in charge of the buffet and he told everyone up there to let me sit there and write. I got a lot done and I had the greatest time.

That night Hubby took me to the Japanese restaurant. But I'm starting to show cracks and after Hubby and Steph come back from the casino, they hear the problems with the noise outside. They can fall asleep in a hurricane so they have no problem falling asleep.

However at 1am, I went downstairs and lodged a complaint. The front desk guy was horrible to me, bitching back to me saying it was the first time he'd heard of the problem. I told him I hadn't spoken to a man, but only women before now. Anyway, he wrote down my complaint.

Thankfully when I went back to my room, the noise was quieter and I could sleep.

So that's it for now... stay tuned for the conclusion, Day 5: Jamaica My moment of breakdown and the massive computer failure :(

Part 2 is here now

(Note: I'll be posting more pictures so check back soon!)

Tuesday, June 5, 2012

Finally catching up... and then I'm gone!

Whew, I'm finally catching up with everything... and then it all hits at once again!

Worth The Wait released last week and it snuck up on me! But I'm giving away a copy at Stumbling Over Chaos. So stop by and comment on the lovely Mayhem and you may just win. 

I'm hard at work on the much awaited sequel to The Long Con, which has a working title of Dangerous Submission. Tony and Bradley are in supporting roles (yes, Bradley, Tony thinks you are #1 still) but the story centers around two new characters, Drake and Robbie.

So stay cool in all this heat! :) Bye for now!

Sunday, June 3, 2012

PSA for authors, about auto adding friends on Goodreads..

Hey, this is a public service announcement.

A lot of authors have commented to me about having friends auto-added on Goodreads and they couldn't figure out why.

There are several reasons why but the main thing is when you sign up for Facebook, it will auto select an option to add the people you are friends with on Facebook. If you want to change that, here are the instructions.

Here is a link to the app page of your account:

<----- the culprit. I unclicked this box.

And that's all you need to do. If you're still getting auto-adds, contact Goodreads customer service. They are awesomely friendly! :)