Saturday, November 28, 2009

Vacation, Part 1: travel and bon voyage.... 

Still in a giant flare from the trip, so I've decided to blog about it in pieces: first I'll edit the pix I took from a single day and put them on Facebook, then I'll post an entry here. Starting from the beginning:

November 8th started wayyyyy too early for me! Had to get up at 4am, otherwise known as BCOD (before the crack of dawn). Scrambled around trying to get my butt out the door, fighting nausea and major foggy-headedness.

Just as we were about to leave, Dan discovered he had a TSA lock on his suitcase, and neither of us knew what the combination might be! Wasted valuable time trying to remove it, and then gave up and started trying to stuff our bags and my wheelchair in his car. Tight fit, but we did it and got to the airport check-in area at 5:15, exactly the time recommended by the airline.

Unfortunately, unbeknown to me, the airline had laid off staff, and they were VERY short-handed for a Saturday morning. No one seemed to know what they were doing, and even though we had already checked-in online and just had to give them our bags, it was quite chaotic. Headed for security hoping we could make up some lost time as the last time I had been to the Sioux Falls airport early on a Saturday morning (two years ago), it took no more than 10 minutes to get through.

No such luck. TSA only had one line open, even though it was the busiest travel day of the week. I think it was half an hour before we even got to the screening part.

Security screening seems to get more complicated every time I travel. Gotta keep track of ID, boarding pass, shoes, purse, carry-on, meds, quart-sized bag of liquids, jacket (forgot to leave one in the car, so I was actually wearing two), and in my case, my wheelchair and a cooler of Boost. Naturally, the whole line stopped when my cooler went through the scanner.

Was told I could not bring so much liquid on board. I told the man I had a doctor's note in the front of the cooler and asked if he needed to see it. He said no, but repeated that I wasn't supposed to travel with so much liquid.

Then he said he would need to swab my hands. I was wearing old weight-lifting gloves with padding in the palms so I could maneuver my own wheelchair a bit since Dan was trying to also manage a carry-on with wheels (it was mostly my stuff that wouldn't fit in my own carry-on). So I took off the gloves, waited around while the guy looked for the person do to the swabbing and for them to find the swabs.

While they were doing this, our flight started boarding. We were scrambling like crazy trying to put on shoes, jackets, put everything back in the carry-ons, get my wheelchair set up, etc. People using wheelchairs are usually supposed to board first so the chair can be stowed beneath the aircraft.

We got to the gate and we told that I would have to cross the tarmac and go up steep stairs. There was only one person handling boarding, and she initially said she'd get my wheelchair labeled (and Dan's carry-on since this was a tiny plane with less-than-regulation overhead bins) for stowage, but then she forgot all about us while we waited at the entrance to the stairs leading to the tarmac.

The agent finally got around to us after the standby people had boarded. We were among the last ones out, and everyone had to wait while I hobbled up the stairs and they stowed the wheelchair and Dan's carry-on. At least I can't complain about waiting around on the tarmac, because we took off almost immediately.

Once on board the plane, though, it was a different story than the crazy airport. The flight attendants were pleasant and organized, the pilot got us to Atlanta early, and I would have really enjoyed it if airplane seats weren't so damned uncomfortable. Nearly all the passengers slept during the flight (including Dan and his parents) except me.

We got to Atlanta around 10am Eastern. We had two hours before the next flight and had to change concourses. The Atlanta airport was huge and busy, but not too difficult to maneuver in once we found out which level and train we needed.

Even though it was still morning, I was already dragging pretty badly. Fortunately, Dan tracked down a Starbucks, so I got a small green tea and a bottle of water (had had no time to acquire water in the Sioux Falls airport), which did help. The staff at the gate were really on top of things, and Dan and I boarded without incident except for when one of the passengers smacked me in the head with her carry-on, which left a knot on my scalp.

Dan and I lucked out in that there was no one sitting in the window seat, which gave us room to spread out a bit. The flight to Orlando was pretty short, and we got there early. Between Dan, his parents and I, we had a massive pile of bags, so we used a luggage cart, and by 2pm, we were ready for the hotel shuttle to come pick us up.

Two more phone calls and a 45 minute wait at the curb later, the shuttle arrived. The destination was one originally picked out by Dan's sister (she and her family had to cancel because her son was too ill to travel), and it was pretty nice, one of those condo-like suites where you can cook, and there was even a pool and hot tub on the property. We dumped off our suitcases, I took off the stupid compression hose I have to wear for air travel and traded them for a pair of shorts, and we went to the nearest restaurant where I had a chance of eating safely: Chili's.

I had salmon, mashed potatoes and some mandarin orange slices without any problems, and we headed back to the room that Dan and I were sharing with his parents. I was stiff and in pain from the plane rides, so I decided to make use of the pool and hot tub. Dan went with me but just sat in one of the lawn chairs.

Dan's dad had already gone to bed by the time I got back, and Dan's mom followed soon after. I took a shower to wash off the chlorine and then watched a bit of TV with Dan. He went to bed about 9pm, but I had to stay upright awhile longer because of my digestion, so I read the book I had started on the plane: "One For the Money", a Stephanie Plum novel by Janel Evanovich (I actually brought the first four books of the series) and turned in about 10pm.

Sleep was poor due to an uncomfortable bed (with fibromyalgia, every bed is uncomfortable except my Tempur-pedic) and being able to hear snoring even while wearing an ear plug. Finally dozed off about an hour and a half before everyone else got up. Had thought I was getting up at 7:30, but Dan woke me up at 8:30, and I really had to rush to get me and my bags ready for the shuttle before 9:30.

Sunday, November 9 was embarkation day for our cruise aboard the Disney Wonder. But first, we had to be shuttled back to the Orlando airport because the Disney Cruise Line buses transport from there. And before we could get on one of the Disney buses, we needed to meet up with Dan's grandfather and his grandfather's wife, Virginia, coming in from their hometown of Lakeland, Florida which is about 45 minutes away.

Dan's grandfather arrived in a wheelchair as he gets around a bit unsteadily (as I suspect many 92-year-olds do), and there was a lot of ground to cover. After a fair amount of confusion and wandering back and forth, we got our signed forms and proper ID submitted to Disney for check-in. Our large suitcases went on a different bus to be delivered to our staterooms that afternoon, and we took our carry-ons (which they refer to as "day bags") with us on the passenger bus.

We left Orlando and rode out to Port Canaveral, about a 45 minute drive and near Cape Canaveral, and we were entertained with a video all the way there. There were some really amazing looking ships in port, including ours. The ship next to ours was positively monstrous in size, although I understand some even larger ones are now in use.

We went through security screening, which is similar to that of the airports, and it was crowded and extremely noisy, and with my poor hearing, I had trouble understanding what I was supposed to do where. At some point, I had to get my photo taken for Disney's database, I guess so they would know that if I departed the ship to make sure I got back on again. But then we got to an area where there was another camera set up, and I got really annoyed because I thought we were done with that, not understanding that this was supposed to be a professional photo of our group for a keepsake, so I think I look a bit grumpy in the finished product, heh heh.

We each were given our own ID cards which were also room keys and could be used to charge any shipboard expense to a pre-approved credit card. You needed them for just about everything you did, including getting on and off the ship. But I must admit they were extremely handy and easy to find in a purse since they had an image of Donald Duck on them.

When we finally got down with all the checking in and photo taking, the first thing everyone else wanted to do was go to the buffet. I freaked out a little because those places are almost never safe for someone with celiac disease. But I reminded myself that this was Disney, and they have a reputation for being able to accommodate a gluten-free diet.

It was very chaotic in the restaurant as apparently most of the other passengers had had the same idea to dine right then, but I managed to track down someone who worked there and asked them if they could direct me to someone who would know what I could safely eat. After awhile, a very nice chef whose name tag said he was from Jamaica came out from the kitchen and walked me through the buffet, pointing out which items were gluten free. I was able to have tomato salad, chilled shrimp, roasted potatoes, melon and a small slice of rare beef.

After we ate, Dan and I wanted to explore the ship until our stateroom was ready, but everyone else was content with hanging out in the restaurant, so we bid them adieu and started rolling. I had a hard time believing I was on a ship because it was fancier even than most hotels I had ever stayed in. Marble floors, huge columns, high ceilings, long corridors, winding staircases, see-though elevators, balconies, full-sized restaurants, theatres, nightclubs, pools, shops, the works.

The ship had 10 decks, and we decided to go to deck 9 because that's where the pools were. We were surprised to see the kiddie pool already jam-packed and the older kid pool fairly full. The adults-only pool was pretty much empty, and I took note of where the hot tubs were located before we went to the end of the deck where you had open air above the railing, a perfect spot for taking pix.

Shortly after 1:30, we headed for our stateroom. Dan and I had one to ourselves; Dan's parents were next door, and Dan's grandfather and Virginia had a room a bit further away. It was the standard stateroom, but it had everything we needed.

One thing I had to remedy right away, though: it was FREEZING in there, as it had been in the restaurant during lunch. We turned the air conditioning off, but it remained too cold the whole rest of the trip. Excessive air conditioning makes me physically ill, so having it off in the room was fine with me.

The bathroom was actually split in two, which was interesting: one shower room with a sink, and one toilet room with a sink. It was nice that Dan and I could get ready at the same time, but I must warn that anyone who is plus-sized might want to consider a larger room. I am medium-sized, but I could not be in the bathroom with the door open because there simply wasn't space and the door kept hitting me in the butt.

I had had a case of bottled water delivered to our stateroom waiting for our arrival. Anyone who has concerns about staying hydrated should consider doing that so you don't have to waste your energy acquiring enough water to take meds or to just have handy. Having the water in the room already also discouraged me from drinking less healthy stuff.

The room had a little fridge, which I filled with Boost and Evian, and I found a place to store the gluten free snacks I'd brought along: Tanka (buffalo) bars, almond bars, organic jerky, soy crackers, GF pretzels, and rice chips that had crumbled to dust during the flight. Because the room was so narrow and I was stashing a wheelchair at the foot of the bed, there was no place for my ginormous suitcase to go except in the closet, which meant I needed to unpack it first. But there were plenty of drawers and hangers and even a combination safe where we could keep our passports.

First order of business on the ship once all were aboard was an emergency drill. That's where you don the life vests provided in your stateroom and head to a designated spot so you can be accounted for and, if necessary, assigned a lifeboat. You are not supposed to take elevators in an emergency, so I tried skipping my wheelchair and taking the stairs with everyone else; it was a slow and painful journey, but I made it.

After the drill, we ditched the life vests in the stateroom, grabbed the camera, and headed for the bon voyage party. We should have had plenty of time, but we found out that the main elevators are so small that they'll only hold my wheelchair, Dan and maybe one or two others, and the lobby was jam packed with families with strollers, so every time the elevator door opened, if there were more than two people in it, we had to wait for the next one. By the time we were able to get up to deck 9, the party was well under way.

There was a jumbo screen showing what was happening on stage, but every place in view of that screen was wall to wall people, no room for a wheelchair at all. We tried squeezing in at the far right of the actual stage behind a few kids, but this guy who was at least 6 foot 5 inches kept standing in front of me. I'd move a bit to try to see around him, and he'd move in front of me again.

The first part of the show was a dance party with some very enthusiastic dancing crew members. Reminded me of when I used to do high-impact aerobics except that Miley Cyrus hadn't been born yet, heh heh. Anyway, most of the music was very catchy, and I got a few pix where I managed to crop out the tall guy blocking my view.

The second part was where the Disney cast members came out dressed in nautical gear. By then, it had gotten more crowded, and I couldn't get out from behind the tall guy and couldn't even see what was happening on the stage, so Dan took the camera and held it up high enough to get some shots that I could look at later. He took the one of Minnie Mouse at the beginning of this entry.

At the end of the show, the ship began to pull away from the port. I thought it pretty exciting, but thanks to our proximity to tropical storm Ida, the wind was picking up quite a bit, and this caused the ship to sway quite a bit more than it would in calm weather. As we waited for the crowd to disperse, Dan got an expression on his face usually reserved for a migraine.

We went over to a table in the grown-ups only section and soon ran into Dan's parents, grandfather and Virginia. They had not attended the bon voyage party but had done something else. I noticed that the sun was going down over the rapidly disappearing port, so I asked Dan to take me out to where I could get some pix.

By the time the sun was completely down, the wind was probably 40mph, and Dan was looking green. I thought maybe if we went to a lower deck where he couldn't actually see the ship moving he might fare better, so we went to the main lobby. It was pretty much deserted as most people were at dinner or in their staterooms.

There were holiday decorations all over the lobby, including a tree that reached up to the next deck. There was a nice statue of the ship's mascot Ariel, the little mermaid. We also wandered around some shops and down some corridors that lead to the nightclubs.

We went to the guest services desk and asked whether the adult-only beach on Disney's island (our stop on day 3) was handicap-accessible and were delighted to find out that it was. Then Dan said he was getting really nauseous, so we went back to the stateroom so he could take some Dramamine and lie down for awhile. We had been assigned the very last seating for dinner, 8:15pm, so Dan got to rest for about an hour and a half, but it didn't seem to help.

Here's how evening dining works on the Disney Wonder: you are assigned the same time each night, but in a different restaurant each night (actually, with a four-night cruise and three restaurants, you do eat one place twice, but the menu is different). Your wait staff, however, remains the same each night, VERY handy for someone like me with dietary restrictions so I don't have to explain them over and over. They seat families together, so we had a chance to catch up with Dan's parents and grandfather and Virginia every evening, which was very nice.

That first night, we ate at a place called Triton's. It was French-themed, but unfortunately, because it was our first night, the chefs had not had the opportunity to pre-make anything gluten free, so I just had to pick something out and see if it could be adapted. Had wanted to try escargot, but neither that nor the soup I'd picked out was safe. I ended up with braised lamb shank on polenta, cocktail shrimp (I couldn't have the cocktail sauce, so they gave me extra shrimp), and berries for dessert.

Since we had the same staff each night, we got to know them pretty well. Our head server, Joao, was from Portugal; the server, Vladimir, was from Costa Rica; and the assistant server, Jenn, was from England. They were very friendly and attentive; they noticed that Dan's parents like to sample desserts and that I always want unsweetened iced tea. And Joao, from the first night on, would bring me the menu for the following night so that I could order early and the chefs could modify it to be gluten free.

Poor Dan wasn't faring too well. We had a table near a window, and the ship was swaying quite noticeably. By the time the entree came, Dan took one bite of his lobster filled pasta and had to bolt for the bathroom.

We finished dinner about 10pm, and Dan was in the stateroom by then, so there was some question as to how I was gonna get back to the room all the way on the other end of the ship in my wheelchair. Dan's mom was pushing her dad's wheelchair. Much to my amazement, Vladamir personally pushed my chair out of the restaurant and all the way to my room!

Back at the room, Dan bore a resemblance to a hungover man having bed spins. I felt horrible for him. I had expected that I would be the one to get seasick as I get car sick and get motion sickness in movie theatres if I sit too close to the screen, but I guess six years of aquacise class had acclimated me to the sensation of floating back and forth.

I was, however, in more pain than usual due to the long day, so I got the crazy notion of going up to deck 9 and using the hot tub. It actually wasn't too long a walk because the grown-up pool was on the same side of the ship as our room, and I could take the now-empty elevator. I put on the swimsuit, a sarong-type cover up, aqua socks, grabbed a towel, water and a room key and ventured out.

The wind had not died down in the slightest. The swimming pool was completely out of the question as the water was sloshing and spraying everywhere. The hot tubs, being smaller, weren't sloshing, so I found one with only two people in it and tied my towel and sarong to the railing as I could think of no other way to keep them from blowing overboard.

Had a nice chat with the couple in the hot tub, who were from Orlando and had gone on several cruises. They weren't fazed whatsoever by the rough sea and said they'd be going to the beach when we went ashore no matter what the weather. I stayed just long enough to relax some muscles, no more than 15 minutes, and headed back before I could get too overtired.

Took a shower in the room, and settled on the rather uncomfortable couch to read. Because of the gastroparesis, I am not supposed to lie down for at least 3 to 4 hours after a meal, which meant I would have stay up until at least 1am due to the lateness of our dinners. Since our excursion the next day wasn't until noon, I figured I'd try to sleep in....

Thus ends installment one. More to follow as soon as the pix are edited.

Friday, November 27, 2009

Happy Thanksgiving! 


Tuesday, November 24, 2009

What I told Dr. Oz..... 

I have had fibromyalgia since 1997, long enough ago for me to develop coping skills so that I feel I no longer "suffer" from it, but simply live with it. During the first three years of my illness, however, I had not yet been diagnosed, and suffering was a pretty accurate term for what I went through. Prior to onset, I had been a healthy married woman who exercised regularly, ate a reasonable diet, and worked full-time in a relatively low-stress occupation.

The last day I experienced zero pain was April 19, 1999 when I was given morphine during a surgery, and of course, when the morphine wore off, the pain of the previous two years returned and never again has been completely eliminated. I experience several types of pain simultaneously: muscle, joint, tendon, nerve, etc. These can stem from injury or overuse, or from nothing at all. The pain response is way out of proportion to the cause: for instance, I can stub a toe, and the pain might spread up the foot, up the leg, maybe even into the back all the way up to the neck. Also, I will experience pain long after the source of it has healed. Example: pain at the site of a breast biopsy a year after the biopsy, and pain in teeth two years after a root canal. It is as though my brain forgot to tell my body that I have healed. Even stranger is getting a pain response to stimuli such as light, sound, smell or extreme fatigue. I get intractable migraines that last an average of six days.

But even though my baseline pain level is at least 6 on a scale of 1 to 10 on a daily basis, and even though there are times it gets to a level that would send most people to an emergency room, for me, pain is not the worst part of having fibromyalgia. If it were just pain, I could put up with it and find a way to function. It is the fatigue and cognitive dysfunction that have most altered my life.

Fatigue is actually a barely adequate word for what I experience daily. Debilitating unrelenting exhaustion is a better description. I often must rest 12 hours per day, and that is on a day when I don't do anything particularly taxing. I am so devoid of energy that I cannot drive for more than 45 minutes continuously because I will doze off at the wheel. I cannot walk further than one or two city blocks without rest and must use a wheelchair for longer distances. My husband must push the wheelchair as propelling it myself will cause even more pain and fatigue. Something as simple as a shower can wipe me out for the rest of the day. Except for going to water therapy and my husband driving me to church, I am rarely able to leave the house for long.

Even worse is the cognitive dysfunction. I have trouble finding words, both verbal and written, transpose numbers and letters, remembering and understanding instructions, recognizing people I have seen before, concentrating on a task, remembering what I have said, comprehending what I am reading. I will be speaking to someone and will forget mid-sentence or even mid-word what I am saying. I will make wrong turns driving to familiar places. I might misspell my own name, forget my phone number or put my keys in the freezer. My mental processing speed is slowed, and I can no longer do math in my head or write a poem. I once had a photographic memory, but I honestly believe I have lost probably 15 IQ points since becoming ill.

I have encountered great difficulty being understood by the medical community. While I have been fortunate enough to encounter some fantastic doctors, there have been enough who were rude, ill-informed and who caused me harm. I am generally an amiable person and not prone to grudges, but due to my unfortunate experiences with the medical community, I find myself unduly nervous and defensive around new doctors, even though I know this is counterproductive to proper treatment. I have been told the following by medical professionals, all of which has been untrue in my case: that I must have been a type-A personality, that I was lazy, that I had somatoform disorder because fibromyalgia isn't a real ailment, that I could be cured by vigorous cardiovascular exercise, that fibromyalgia is never disabling, that fibromyalgia is just another word for depression, that I was a non-compliant patient when I took prescribed medication that made me sicker.

Family and friends have been kinder with a few exceptions. There is one person who believes I got sick out of a need for attention and stay sick because I "dwell on" fibromyalgia by communicating with others about it and has even told me nobody cares about my illness, but I ignore the comments. A few people have implied that I got sick because I didn't have enough faith in a higher power and that all I needed to do was go to a certain faith healer. But my husband sees me every day and knows about those times the pain is so severe I can do nothing but cry, has seen me nearly faint from exhaustion, has had to remind me of what he told me five minutes ago. He gets mad sometimes, but I know he's mad at the illness, not me. And that's okay, because the illness angers me sometimes too.

The main thing I would like the public to know about this condition is that it is probably a central nervous system disorder and that it is systemic. It is not caused by negative thoughts or depression, although these can cause the person to feel worse once the ailment is already present. Finally, a patient's acceptance of the disorder does NOT mean they have given up on getting better, it simply means they have made peace with their condition if they are doing the best they can with whatever they have to work with.

Dr. Oz wants to hear from fibromyalgia patients! 

After years of flooding Oprah's website with requests to do a show on fibromyalgia, I was somewhat surprised to find out that her very own Dr. Oz is soliciting personal accounts for his new program. Here's your chance to make sure he gets it right.....

Share Your Story!

While I don't agree with everything he has said publicly about fibromyalgia, I welcome the chance to get the publicity ball rolling. I submitted my "story" tonight and will post what I said in a separate entry. Will also report any response I may receive.

Saturday, November 21, 2009

The weary traveler is home..... 

What's that dragging, a long behind? Nah, it's just me after vacation, heh heh. Good thing I had such a great time, or my present mega-flare would be a major tragedy.

Slept a total of 25 of the first 36 hours after I came home, and am still enormously exhausted. Could hardly walk on Sunday, but have forced myself to go to water therapy, the massage therapist and have done one session on the Gazelle, so I am slowly becoming more mobile. But I don't think I'll be back to pre-vacation form for at least another week.

Took some 800 pix on the trip, one of which is above. Have downloaded all of them from my camera but have only edited the one so far. Will take weeks to sort through them all, but worth the effort as I think I have some pretty good ones.

PROMISE to do a detailed description of my trip as soon as I am up to it and post some accompanying pix. But for now, know that I have conquered the Caribbean, heh heh.

Friday, November 06, 2009

I'm outta here! 

I'm off to be a pirate in the Caribbean! I've only got last-minute items left to do (like making sure everything's gonna fit in the car to take to the airport, heh heh), but am otherwise ready to go. My biggest concern at the moment is whether I'm actually gonna be able to get up at 4am and get out the door without major digestive issues.

Unfortunately, my nephew is in the hospital with croup. One or both of his parents will stay at home with him. If both, my niece won't be going either. Or her paternal grandmother.

But Dan's parents, grandfather and grandfather's wife are all definitely still going. Due to tropical storm Ida, rain and/or thunderstorms are forecast for every single day we plan to do something outdoors, but even then, it should get no colder than 60 degrees. I hope I'll be able to still get some decent pix.

Since this is a cruise, though, even if everything gets rained out, we will have our fancy dinners, live entertainment and Disney characters to get us by, heh heh. Several of the Magic Kingdom attractions can operate rain or shine, and we have reservations at Tony's, an Italian restaurant modeled after the one in "Lady and the Tramp". And I will still be able to say I sailed the Caribbean and saw the Bahamas.

Only 12 hours until I embark upon my adventure! I will be offline until at least November 15. But I promise details when I am up to relaying them.

Wednesday, November 04, 2009

It's a boy! 

My sister had her second child, Avery, last night. He was 7 pounds, 12 ounces and was 20 inches long. He was positioned a bit oddly when born, but other than being a bit bruised, he is fine, as is my sister.

I now have a grand total of three nephews and two nieces so far. There will be one more nephew in a few more weeks as my stepbrother's wife is due on the 17th. Amazing since all of the nieces and nephews are under the age of six.

Tuesday, November 03, 2009

When celiacs can't afford groceries.... 

Another article from Celiac.com. This covers what must be done in terms of food assistance for those who are gluten intolerant....

Soup Kitchens, Food Pantries, & Restricted Diets

Lots of people in South Dakota must resort to donated food to make ends meet, but I have never heard of a food drive for people with special dietary needs. I guess the assumption is that one cannot afford to be picky.

Celiac disease can cause a lot more than digestive upset.... 

Got this from the Celiac.com newsletter. It details all of the bodily systems that can be affected by celiac disease....

Celiac Disease Head to Toe

The list of related autoimmune disorders is quite lengthy. Pretty much, once the immune system goes awry, the body seems to want to collect ailments.

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