This month (May 20th to be exact) David and I will celebrate 12 years married. We've been together for 15. When we had children we made a pact to each other that we would take 1 week of vacation a year with each other and without children. That one week has been an invaluable blessing to our relationship with each other. We are blessed to have family that can help us accomplish that week by helping out with our boys. In the beginning we used to head out to Las Vegas or Colorado, but in 2005 we took our first cruise and we've been hooked ever since.
David is a workaholic. I realize that a lot of men are, but David cannot be helped with a 12-step program. He will most certainly die while replying to an email from work. I'm not being morbid, if you don't know me and you don't know my relationship with David then that sounds horrible. BUT, he loves his job and he happens to be very good at it. Let's just sum up his job description as highly technical and trains that go choo-choo.
For any of David's colleagues who may stumble upon my rantings I apologize for the juvenile, overly simplistic description, but my kids have an even more juvenile understanding and they were very disappointed to find out that their Dad works in technology and doesn't actually drive trains. Well, except for that one time at the zoo when CSX let him drive the train that goes around the zoo on a circular track with very little opportunity for disaster (and the regular zoo conductor was by his side). The kids still found it disappointing that they couldn't drive it with him. OI VEI.
David is extremely blessed to have a job which embraces his passion and hobby for technology. As his Dad would say, he's allergic to "dirty" work. What this means is, our yard looks like crap and if there was a computer program that could actually do the manual labor of yard work our yard would be stunning. However, David and his highly technical friends have not found yard work to be an interesting or economical project. I don't really know why, I just know it must be one of those two reasons because my yard looks like crap.
On the flip side, I dare you to come into my home and attempt to turn on the TV without a lesson. (I'm not really daring you, please don't see this as an invitation to stop on by and watch Jerry Springer.) If you're really looking for a challenge, you could attempt to change the thermostat. I'm convinced that even though I know how to change the thermostat he has an app on his brilliant iPhone that vetoes my entries.
My point is. there is a gadget for everything and everything has a gadget. David's toys are expensive. He will most certainly die with an iPhone, iPad, MacBook or (look away now, Apple geeks) shudder to think he could possibly have that damned IBM Thinkpad (what a stupid name BTW) in his hands. He would only use the IBM if the Mac was (crap I can't even think why he would)... I am technical enough to explain that work provides him with an IBM computer that runs MS software (that's Microsoft, not Multiple Sclerosis). David turns around and virtually connects to the IBM and runs a windows environment on his Mac for work. Say that three times fast. Therefore, best I can tell, the IBM Thinkpad (such a stupid name) is similar to a plaque on his desk at work and probably needs dusting.
ALL OF THAT is why I love cruising! About an hour after the ship leaves dock, the technology is still there, but it is not online.
David and I met in college, but specifically we worked at Wal-Mart together. We've come a long way from the ramen-eating college lifestyle. You can take David out of Wal-Mart, but you can't take the Wal-Mart out of David. That is to say he's cheap.
On land, from Jacksonville, FL to Los Angeles, CA and even in India his company keeps him "connected." David will not pay a penny from his own pocket for an internet connection. At sea, he is on vacation and satellite internet connection is A: so slow that he would slit his wrists and B: not free. So, for one week a year I get David's attention and I cherish the time.
So, what the hell does cruising have to do with Lupus?
Well, in May 2010 David and I went on the Carnival Glory. Since we were celebrating our 10 year wedding anniversary we spent a little more money than normal and got a suite and it was SWEET. This was our seventh cruise with Carnival (we now have 12) and the first time (and the only time to date) that we saw a medical evacuation by helicopter. There was one on the first night of the cruise and another evacuation on the second night of the cruise. This was unheard of. What's scarier is I was almost the third.
David and I were having the time of our lives. We were both in relatively good shape and very active and we were having a blast. THEN... and I remember the precise moment that I felt like someone had sucked "the happy" and "the healthy" right out from under me.
David and I were playing in the ocean at Half Moon Cay. Nothing dirty... we were splashing each other and acting like kids in the water and chatting up a young lady who had just graduated high school and her Aunt who took her on a cruise to celebrate. I was teasing David about not being able to float (he sinks like a brick but he can out-swim me any day). I attempted to get him to float long enough to take a picture and he took a picture of me floating. Then our new friends took our picture for us. This is that picture:
Having been in the infirmary just hours before this, I knew that this chopper was for the patient that was next to me whose appendix was in danger of rupturing. It was also an extremely sobering reminder to me that I needed to take care of myself.
Our cruise director on the Glory was Jorge Solano. During the medical evacuations Jorge would make announcements over the Emergency PA system to explain what was going on and remind all guests and crew not to use flash photography because we could disorient the helicopter pilot.
So now, God has a Columbian accent (in my head).
I am humbled and proud to say Jorge is a true friend and by far the funniest cruise director I've ever had (JH if you read this... ummmm you're a very close second).
The day after I initially got sick, David and I were taking it easy and we went to the late show. I was constantly eating bread and cheerios because my stomach was still uneasy. So, our awesome wait staff took excellent care of me and after dinner they made me my own special plate of fresh dinner rolls and bread. They put a room service lid over the plate so that I could take it to the show.
David went ahead of me to the show to get good seats for us. Don't you know I walked in the theater just after the show had started and Jorge was on stage talking up the crowd. There I was with my "room service" when generally people don't bring food let alone entire plates into the theater. I may as well have worn a bullseye for Jorge. He picked on me and I nearly peed myself laughing. He lets me pick on him too though, so I can take it.
Recently I reunited with Jorge on the Carnival Magic and we (well I can't really speak for him so maybe just "I") realized that we make an excellent pranking team. A certain comedian that wears wranglers with so much starch they can stand on their own may not think I'm very funny, but he was victimized.
I had the pleasure of having dinner with these three guys (Al, Tony & Jorge) the night before the roast. We ate at Cucina del Capitano (a restaurant on the Carnival Magic). There were all types of yummy appetizers, Tony and Jorge kept insisting that I try their balls. I finally gave in and ate one of Tony's (I think Jorge's balls were just too much for me to handle). Laughter is my favorite medicine and it always makes me feel better. So, I could never have too many comedian friends.
One of my biggest challenges with Lupus is photosensitivity.
It is easier to tell people I'm allergic to the sun. So it's rather
ironic that I love cruising so much. UV exposure is such a big trigger
for me, I'll explain it in a separate post.
David is a workaholic. I realize that a lot of men are, but David cannot be helped with a 12-step program. He will most certainly die while replying to an email from work. I'm not being morbid, if you don't know me and you don't know my relationship with David then that sounds horrible. BUT, he loves his job and he happens to be very good at it. Let's just sum up his job description as highly technical and trains that go choo-choo.For any of David's colleagues who may stumble upon my rantings I apologize for the juvenile, overly simplistic description, but my kids have an even more juvenile understanding and they were very disappointed to find out that their Dad works in technology and doesn't actually drive trains. Well, except for that one time at the zoo when CSX let him drive the train that goes around the zoo on a circular track with very little opportunity for disaster (and the regular zoo conductor was by his side). The kids still found it disappointing that they couldn't drive it with him. OI VEI.
David is extremely blessed to have a job which embraces his passion and hobby for technology. As his Dad would say, he's allergic to "dirty" work. What this means is, our yard looks like crap and if there was a computer program that could actually do the manual labor of yard work our yard would be stunning. However, David and his highly technical friends have not found yard work to be an interesting or economical project. I don't really know why, I just know it must be one of those two reasons because my yard looks like crap.
My point is. there is a gadget for everything and everything has a gadget. David's toys are expensive. He will most certainly die with an iPhone, iPad, MacBook or (look away now, Apple geeks) shudder to think he could possibly have that damned IBM Thinkpad (what a stupid name BTW) in his hands. He would only use the IBM if the Mac was (crap I can't even think why he would)... I am technical enough to explain that work provides him with an IBM computer that runs MS software (that's Microsoft, not Multiple Sclerosis). David turns around and virtually connects to the IBM and runs a windows environment on his Mac for work. Say that three times fast. Therefore, best I can tell, the IBM Thinkpad (such a stupid name) is similar to a plaque on his desk at work and probably needs dusting.
ALL OF THAT is why I love cruising! About an hour after the ship leaves dock, the technology is still there, but it is not online.
David and I met in college, but specifically we worked at Wal-Mart together. We've come a long way from the ramen-eating college lifestyle. You can take David out of Wal-Mart, but you can't take the Wal-Mart out of David. That is to say he's cheap.
On land, from Jacksonville, FL to Los Angeles, CA and even in India his company keeps him "connected." David will not pay a penny from his own pocket for an internet connection. At sea, he is on vacation and satellite internet connection is A: so slow that he would slit his wrists and B: not free. So, for one week a year I get David's attention and I cherish the time.
So, what the hell does cruising have to do with Lupus?
Well, in May 2010 David and I went on the Carnival Glory. Since we were celebrating our 10 year wedding anniversary we spent a little more money than normal and got a suite and it was SWEET. This was our seventh cruise with Carnival (we now have 12) and the first time (and the only time to date) that we saw a medical evacuation by helicopter. There was one on the first night of the cruise and another evacuation on the second night of the cruise. This was unheard of. What's scarier is I was almost the third.
David and I were having the time of our lives. We were both in relatively good shape and very active and we were having a blast. THEN... and I remember the precise moment that I felt like someone had sucked "the happy" and "the healthy" right out from under me.
David and I were playing in the ocean at Half Moon Cay. Nothing dirty... we were splashing each other and acting like kids in the water and chatting up a young lady who had just graduated high school and her Aunt who took her on a cruise to celebrate. I was teasing David about not being able to float (he sinks like a brick but he can out-swim me any day). I attempted to get him to float long enough to take a picture and he took a picture of me floating. Then our new friends took our picture for us. This is that picture:
I remember smiling for this picture as if it was yesterday. But it was May 10, 2010.
The significance of that date actually didn't dawn on me until this very moment that I pulled it from iPhoto. As my celebrity husband Michael Bublé would say "HOLY SHITBALLS mom."
You see, immediately after this picture was taken I told David I wasn't feeling well and I walked out of the ocean leaving him to splash in the water with our new friends.
I went to the restroom and I vomited.
I have not felt that good since this picture was taken. My life drastically changed.
This may seem dramatic, but "drastic" isn't actually as descriptive as I would like. The association I didn't make until the aforementioned "holy shitballs mom" moment is, May 10 is in fact World Lupus Day.
I walked off of that beach, threw up a few times and waited what seemed like days for a tender back to the ship. The tender captain was kind enough to give me a bucket and let me sit in the shade with him as he steered the boat.
I remember getting off that little boat before everyone else and walking as fast as I could to the Lido deck where I hoped to find some sprite and bread. Because I just knew that bread would make it all better. Only problem was I couldn't find Lido.
Now, if you've ever been on a cruise you know that small children who can't read know where Lido is. I quickly became extremely disoriented. I didn't know up from down and I was shaking uncontrollably. I had lost David on the tender because I was in such a hurry to get to Lido and get bread, and the captain (tender captain, not ship) had let me off the boat first. Anyway, I was alone wandering the ship in a wet bathing suit and possibly speaking in tongues. A crew member gently guided me to deck zero where the infirmary is located. The nurse on duty took one look at me and threw me (no exaggeration) onto a gurney. Here are the worst souvenirs ever:
 |
| I like the nurse's assessment; "feeling funny." I'm not sure if she had a funny feeling about me, or if I felt funny to her, but I don't recall laughing much. Oh and they spelled my name wrong; it's CandAce.... just sayin' |
 |
| This was not actually my highest blood pressure reading that day, but my chart was not created until I was in the cardiac room. Just the fact that they moved me to the cardiac room should tell you this wasn't a fluke. Prior to this day, I had NEVER had a blood pressure recorded above 120/80 and that includes both of my high risk pregnancies. |
I missed our dinner that night and I was sent to the cabin with strict instructions to go to bed and stay in the cabin. I was also told no alcohol for the duration of the cruise and no caffeine.
I had never truly thought that I was dying before. But, that day I prayed to God to spare my life because I wasn't ready to leave my boys. I cried and I sobbed and I cried aloud that "I didn't want to die." So, when the doctor told me no alcohol and no caffeine, I did everything he said.
If I had any doubt about his instructions, I was reminded by the coast guard chopper that brought me to my feet about 2 hours after I was discharged and resting in our cabin. I swear I heard that chopper and I looked at David (because remember we had just seen our first medical evacuation the night before) and just shook my head in disbelief. It sounded like the chopper was right outside our balcony. I pulled back the curtain and it was directly above my balcony. I grabbed the camera as fast as I could. This video starts from my cabin balcony and then I headed up to Lido (now cognitive, but breaking doctor's orders and in my Carnival robe) but I had to get a closer look.
Having been in the infirmary just hours before this, I knew that this chopper was for the patient that was next to me whose appendix was in danger of rupturing. It was also an extremely sobering reminder to me that I needed to take care of myself.
Our cruise director on the Glory was Jorge Solano. During the medical evacuations Jorge would make announcements over the Emergency PA system to explain what was going on and remind all guests and crew not to use flash photography because we could disorient the helicopter pilot.
 |
| reunited with Jorge on the Magic |
I am humbled and proud to say Jorge is a true friend and by far the funniest cruise director I've ever had (JH if you read this... ummmm you're a very close second).
The day after I initially got sick, David and I were taking it easy and we went to the late show. I was constantly eating bread and cheerios because my stomach was still uneasy. So, our awesome wait staff took excellent care of me and after dinner they made me my own special plate of fresh dinner rolls and bread. They put a room service lid over the plate so that I could take it to the show.
David went ahead of me to the show to get good seats for us. Don't you know I walked in the theater just after the show had started and Jorge was on stage talking up the crowd. There I was with my "room service" when generally people don't bring food let alone entire plates into the theater. I may as well have worn a bullseye for Jorge. He picked on me and I nearly peed myself laughing. He lets me pick on him too though, so I can take it.
 |
This was me singing a parody of "What's Up" at the Roast of John Held. I love it because Jorge teared up ;) From Left to right: Al Ernst, Tony Esposito, Jorge Solano, Storm'n Norm, Host Mach, Big Ed and John Heald
|
 |
| close-up of Jorge crying because it makes me smile. Also, Tony said that Jorge looks like Manny Delgado on "Modern Family." |
I had the pleasure of having dinner with these three guys (Al, Tony & Jorge) the night before the roast. We ate at Cucina del Capitano (a restaurant on the Carnival Magic). There were all types of yummy appetizers, Tony and Jorge kept insisting that I try their balls. I finally gave in and ate one of Tony's (I think Jorge's balls were just too much for me to handle). Laughter is my favorite medicine and it always makes me feel better. So, I could never have too many comedian friends.
So my journey of a diagnosis to Lupus began with a medical crisis on a cruise. I took away 2 things from that experience:
1. I still love cruising -- in fact, I love it more now!
2. The medical center on a cruise ship is more like a hospital than you would think. The doctors and nurses are required to have BLS (basic life support) and ACLS (advanced cardiac life support) certifications. They are equipped to handle any emergency. If a coast guard medical evacuation is ordered, it isn't at the patient's request. It's at the doctor's order.
On a side note, it was extremely difficult for me to share my first post, but it was more healing than I ever could have known. The love and support that I have received from my family and friends has been amazing. Thank you for supporting me.
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