In the vein of being positive (thanks to The Pillow Fighters Club for keeping that always in mind), and the current thralls of depression I’ve found myself in, I’m going to be taking up the 100 happy days challenge. I’ll be posting my happy photos on my Instagram, and they will appear on the side wall right here.
Hoping you all 100 days of happiness too!
Everyone knows Disney World is a magical place, and is typically a place every small child dreams of going. When I was little, I had a VHS tape that showed clips of Disney and I would cry and cry about wanting to go ride the teacups. It got to the point that my mom had to throw out the VHS tape. So, when A’s family invited me and A to come along on a trip to Disney World, of course I agreed. And then for months I actually had to work really hard at not being too excited or anticipatory, in case something fell through and the trip got canceled. But as October came around the airplane tickets had purchased and reservations made. Everything was ready to go. We’d be in Orlando Friday night, Saturday, Sunday, and most of Monday.
As someone with chronic pain, I knew I had to make some extra considerations to prepare for the trip. I packaged up my TENS unit in it’s original case. I poured some of the electrode connection spray into an airline approved 3oz bottle and labeled it with a sharpy as being a relevant medical liquid. Of course that went in the required baggy with all my other liquids. In a separate baggy I put in all my medications; I used a small daily pill dispenser for my usual pills, but left all the pain killers in their original packaging- especially the narcotic, since I brought my Norco along. I also brought two extra batteries for the TENS unit; I put painters tape of the terminals and included those in the baggy with the medicines. I also bought a waist bag that large enough to fit my TENS and phone. I cut a slit in the corner on the back of bag and stitched the edges- like a button hole- so I could feed the electrode wires through; that way, the TENS couldn’t fall off, the wires wouldn’t get unnecessarily pulled, and if there was any rain (it is Florida after all) I would have some extra degree of protection for my TENS. Plus I could keep extra pain pills in there, and with me, for when I needed. Everything got packed up into two carry on bags.
A lovely friend agreed to watch the pets for the days we’d be gone, and we made the two and a half hour drive down to A’s sister’s house after classes on Friday. Since A’s sister’s house was about twenty minutes from the airport, her roommate drove us over and no one had to pay for parking. It was pretty slow at the airport, so the security line moved pretty quickly. I made sure to put my liquid and medication baggies into one tray, and my TENS into one tray all by itself- I was worried that the TENS may cause some problems… a small device with lots of wires! Oh my! As we moved forward, one TSA agent decided to open up another line to the metal detector- rather than the body scanner- and called me through. It really wasn’t that busy, so I’m not sure why he did it… he only let two or three of us through before closing it again, but I got through security super fast and didn’t have to hold still in the scanner so I was glad he did. At the end of the conveyer sat my TENS waiting for pick up. No one said anything to me about it. I was quite relieved.
Then of course is the usual airport fun… Find your terminal. Sit and wait. A and I had downloaded all of the Welcome to Nightvale podcast and shared headphones, giggling along. A also got me a bit of food and drink so I could take some NSAIDs. I thought about putting my TENS on, since the small seats, and necessary sitting position, on airplanes makes my pain worse- but I didn’t want to cause any problems (re: SMALL BOX- WIRES!), so I elected not to. The first plane ride wasn’t bad- just a short hop over to the Atlanta airport. That was when things started to get rougher. We’d already done a day of classes, three hours in a car, and a flight. My body was not too happy. But it had to do more- the Atlanta airport is HUGE and we had to make it quite the distance from where our plane let out, to our next terminal, in a short amount of time. All I have to say is thank goodness for the fast walk lanes and the tram. We ended up at the terminal with enough time to rest. The flight from Atlanta to Orlando was longer. By the time we got off the plane, I was definitely in pain and using A as a crutch. He even made a comment about being able to feel how heavily I was walking. Luckily, A’s parents were there to pick us up and it was only a short tram ride and walk from our terminal to their car.
We stayed in a “vila” off Disney property. It was very nice, although we didn’t spend much time there other than sleeping. That first night we all had a few slices of pizza and then crashed. We were up early the next morning ready to begin our Disney adventure. Now I must tell you, I’m not a morning person. I need to take some quiet time to wake up. And I’m certainly not a breakfast person. A’s parents made a nice spread of eggs and bacon and fruit for breakfast, and I did my best to eat some before we left for the park at 10AM. Saturday was Epcot day for the International Food Festival. Plus a round of putt-putt in the morning. Before we left I stuck on the TENS and took a Norco, since I knew we’d be out for over 12 hrs, and doing a LOT of moving.
Putt-putt was fun. We went to Winter Sumerland. I ended up winning, on a technicality… at one hole, I managed to jump my ball completely over the attraction and into the next one- where it took a ride all the way up the north pole… as such, A’s family decreed that I got to count that hole as a hole-in-one. I love his family so much, they are so fun. Spending the time with them, by far, made this the best trip.
Epcot was amazing. If you’ve never been to the International Food Festival- you must. I can still taste the delicious food. Getting in to Epcot, through security, did take a little navigating. Security wants you to take off your bags so they can look through them- but, of course, my bag was attached to my hip (where the TENS electrodes were placed). I had it open so they can look through it, but to detach the lead wires, take the pack off, put it back on, and reattach the wires would have been a huge hassle- and left me without my TENS running for a decent amount of time. It was here A’s mom helped me learned the magic words “its a medical device.” I was trying to explain that I couldn’t take the bag off, because it was attached to me via the wires, but as soon as she said that he got it and let me through. For the trips to the other parks for the rest of the trip all I had to say was “its a medical device, I can’t take it off” and they let me in without any problems.
Before getting to the food we did Spaceship Earth and Test Track. We also did Ellen’s Energy Adventure at the Universe of Energy- which was a really nice, air conditioned, seated, 45 minute rest. Since A’s youngest sister had been on the ride before, she gave me a warning in the beginning to close my eyes for the “big bang” because of the really bright blast of light. I’m glad I did, even through closed and covered eyes I could tell it got bright. Thankfully the migraine was avoided and the rest of the ride was enjoyable.
Then we moved on to the food. Oh the food. MMMMM. We did the little ride in Mexico to take a break from the heat, but for the most part spent the day outside. We took some nice sitting breaks, and A’s mom, sisters and I got matching henna tattoos. All day I kept incrementally upping the TENS strength. And A was a great physical support when I needed to lean on him to keep moving. We did have fastpass tickets to go to Soarin’, so as the day wound down we skipped part of the food to go see that at our fastpass time. On the way over to Soarin’ we also met Mary Poppins. She was lovely of course. As far as Soarin’ goes- I love that ride. So much. It’s amazing how they can make you feel the wind and smell the oranges. It was also a nice, cool, break- although far too short.
Since it was just right next door, we also did the “The Seas with Nemo and Friends” ride. It was already pretty late at that time though, and we wanted to get more food so we didn’t spend much time looking around at what else was there (apparently there are dolphins).
We were going to stay for the fireworks, but by that time we were exhausted and had another full day (and late night) ahead of us, so after grabbing a bit more to eat, we called it a night. By that point my TENS was up pretty high and I was definitely using A for help moving. When we got back to our vila, everyone grabbed quick showers and passed out. When I took my TENS off that night, the electrode pads were so worn down from the humidity and sweat, they were pretty much done. A new set I used just for that day used up. Luckily I brought an extra set. A few NSAIDs before bed and I was out.
The next morning, TENS reattached and another Norco down, we went to Animal Kingdom. I have to admit I was the most excited about Animal Kingdom. First thing we did was the Safari ride. It was pretty awesome, and we saw a bunch of animals- the guide was actually surprised at how many were out, and A’s sisters both said that was the most they had seen at one time there. I was pretty excited about that. We also saw the Lion King show, which was really good- and a nice chance to sit down. Since A, his dad, and one of his sister’s wanted to go on the Yeti ride, A’s mom, other sister, and I walked the trails and got to see the flying foxes, birds, and best of all TIGERS. I love tigers. I spent a lot of time there. On of the tigers even entertained us, and himself, with a nice swim.
I also had a delicious chai slushy drink, which was great given the heat and humidity. After the others finished their roller-coaster, they wanted to do the rafting ride- but because of the amount of wetness involved and my attachment to a certain electrical shocking device, I declined. A decided to stay with me, and we went and saw the tigers again. The only pictures I took the entire trip was of the tigers.
As the afternoon wore on we decided we were all suitably tired, and had enjoyed enough of the morning, especially since we were going to be at Mickey’s Not-So-Scary Halloween Party at the Magic Kingdom from 7PM until midnight. We went back to the vila for naps. I took another norco, gave the TENS a break, and changed into some cooler- less sweaty- clothes. I think I maybe napped for a half and hour, but everyone else passed out for a few hours. Around 6:30 we changed into our custom made (curtsey of A’s mom and youngest sister) “costumes.” Everyone had a Mickey Mouse face personalized shirt- A’s mom and dad were “momma and papa” with momma mouse wearing pearls and papa mouse a tie. A and I had bride and groom shirts and A’s sisters had graduating and birthday shirts respectively. TENS back on, and some NSAIDs downed, we headed back to Disney.
When we got to the Magic Kingdom, we got special wrist bands for the event; the park is open to a much smaller number of people during the Mickey’s Not-So-Scary Halloween Party. It is remarkable how organized Disney is. They can usher non-participating guests out while letting in those with wrist bands. During the Halloween Party, you can collect candy from various stations and characters. The lines for the candy were all quite long though, so we elected to just ride all the line-reduced rides. We did Pirates of the Caribbean first.
I’ll admit, I Googled this ride before we ever got to Disney. I knew A’s mom loved it and would want us to go on it. I’m not much of a “scary” person though- so I used a couple of YouTube videos to help me know what to expect. The ride was actually pretty enjoyable. We didn’t get wet (so the TENS was safe, but I turned it off before the ride, just to be safe), and none of the drops were too bad. We actually ran into a back up of boats, so did a fair amount of bumping and sitting on the ride. I think there was a participant who needed extra assistance getting on and off the rides, because many of the rides we were on would pause with a little Disney message about staying in our seats/cars, the ride would continue momentarily. It’s nice to know how accommodating they can be- everyone can enjoy the magic.
After Pirates, A’s family wanted to ride Splash Mountain. Another no from me, so A and I hung out as they dropped over the side of the mountain. Then everyone but me did the Run Away Train. It’s one of A’s favorites, so I’m glad he got to go on it. Parts of the new Fantasyland were up and running, so we walked past Beast and Belle’s castle, and went on the Ariel ride. They clearly anticipated that ride to be popular- there was so much space for a very, very, very long line.
Finally we made it over to the part I had dreamed about, and cried about, when I was little. The tea cups. I LOVED the tea cups. We crammed ourselves into the tiny cups. A rode with me, and was actually surprised at how much and how fast I made them spin. See, I get motion sick very easily- I wore sea bands and took Dramamine for the flights (and still get off a bit nauseous). But I LOVE spinning, so I was fine. I actually could have rode the tea cups again and again, but it was already kind of late and there was more to do before the fireworks and parade. After the tea cups we did the Buzz Lightyear ride. So much fun. You use laser guns to shoot all Zurg’s baddies, and try to get the most points. There was one section of unsuspected flashing lights- but quickly closing my eyes avoided anything too bad. After the ride we got some water (note: only buy water at Disney World- don’t drink from the fountains, the fountain water is nasty and sulfer-y) and found a nice spot to sit and watch the firework show. Man Disney can do fireworks. The show was great.
Then we went and found a spot to sit and watch the parade. The good watching spots fill up quickly, but we managed to find a little niche right next to the rope barrier. The spot even had a nice base of a statue to sit on. At this point I was glad to have the break – even though there was so much I wanted to see around the park that we didn’t get to. The TENS got a kick up, and we all got some water.
As with everything Disney does, the parade was great. Because of the niche we were in, a lot of the cast members walking in the parade got right up close with us, and passed us a lot of lollipops (which we distributed to the younger kids around us who were farther back, ‘cuse we’re nice like that). Since it was the last parade of the night, the most remarkable part was how seamlessly they took down the ropes and cleaned it up- AS THEY WENT. Literally, the last people in the parade wound up the rope barriers and picked everything up as they went.
Since the park was closing, everyone began the walk back towards the entrance and out towards the monorail. We got some ice cream, and looked around the shops for a bit before making our exit. I didn’t buy anything, but it was cool to see the wide variety of things they offered. The monorail ride back to the parking-lot was PACKED, but A and I managed to get a seat- which was a huge relief. I don’t know if I could have reliably stood for it. Of course once we got back to the vila we all passed out.
Monday was the final day of our trip. The weather for Saturday and Sunday was lovely; normal Florida hot and humid, but no storms. Monday however, was not as dry. In the morning, we packed up all our belongings and checked out of the vila. I took another Norco, and stuck on my almost un-stickable electrodes.
We went to Universal Studios just to go to The Wizarding World of Harry Potter. As a huge Harry Potter book fan, I of course enjoyed it- but, since it is heavily based on the movies I wouldn’t say I enjoyed it as much as I did Disney. I did get a pumpkin juice- which is my new favorite juice, and tried some cold butterbeer. The butterbear was a bit too sweet for me, but everyone else liked it more than the pumpkin juice. We did the Ollivanders “show” and browsed the wand shop. A bought me a Care of Magical Creatures button, and a Ireland Quidditch button. As much as I want a wand- I didn’t want one of the super replicated, plastic-y, movie wands, so I elected to wait on that one. We also did the walk through portion of Hogwarts, while A’s dad and sister did the ride.
Then it began to pour. We got stuck for about a half an hour at the locker station by the Hogwarts Express. Finally, A’s dad went searching for ponchos. Holy crap were those ponchos expensive. And of course, about 5 minutes after we donned them and started walking, it stopped raining. By that time we knew we needed some lunch before heading to the airport. I can’t remember the name of the restaurant, but I had a tasty salad. I wasn’t feeling too great or hungry at that point, but I made myself eat it anyway. I also took the bathroom as an opportunity to remove my TENS, so that I could easily pack up when we got back to the car.
A’s parents flight was earlier than ours, so we got to the airport about five hours before our flight. I didn’t appreciate the size of the airport when we arrived in Orlando, but boy is that a big airport. The security lines were long, but A supported me as we moved through them. Again, the TENS got it’s own basket and my medications and liquids went in another. No problem with the medications/liquids, but apparently the TENS gave the Orlando TSA some pause, because it took a while to show up at the end of security. No one said anything about it, but I’m guessing they ran it through the x-ray twice. I was getting a bit panicked when it wasn’t with my other belongings, and I couldn’t see it anywhere, but A and his sister calmed me down, and soon enough I had it back.
During our wait at the airport we had some snacks and a bit to drink. I took some NSAIDs to prepare for the flights. I honestly don’t remember much about the flights home. I know we had some turbulence, and it took a long time to land, because that storm we waited out at Universal was moving up the coast. Once we got back to A’s sister’s, we still had a two and a half hour drive home, including a good portion through the foggy mountains. That drive home was rough. I’m so glad A was driving, I know I wouldn’t have been able to make it, but I’m still not sure how he did. We got home, to very happy pets, at about 1AM. And then we passed out, got up early, and went to class on Tuesday.
It took a long time to recover from the trip, especially with school, but I am so glad we went. I often think back on the trip fondly. We had such a great family time. I’m also glad we went when we did, my health has certainly gotten worse since then and I’m not sure I could manage doing what we did then, now.
My insurance requires that I use an online pharmacy for any continuing prescriptions. When I met with Dr. Y, he had to put an order in through Medco ExpressScripts (my required online pharmacy) for the new pills (the aromatase inhibitor, and progesterone).I’m supposed to take the pills for 6 weeks and then return for an exam. I already schedule this exam- on the day met with Dr. Y, and cannot reschedule because they had to make some special accommodations for the timing- since I am traveling “long-distance.” Usually it takes Medco about a week to process and ship the pills- which isn’t bad. That would have put me at just under 6 weeks on the new pills- which is fine. The pills were supposed to ship today, so I logged into the Medco system to check on them, and apparently now they aren’t shipping until the 12th. What the hell?! That’s going to put me a whole lot closer to 4 weeks on the new pills than I want to be- IF they ship on the 12th AND get here within in 2-3 days.
Is it really that hard to fill a prescription? What I if absolutely needed these pills, now. I love my insurance for most things, but they way they handle prescriptions really sucks. If you are going to take forever to fill and ship script, then let me at least pick up some at a local pharmacy in the mean time!
Just give me my medicine, damn-it.
my uterus wants babies now arrrgahh
This is the first time in nine months that I have been off birth control for more than a week. Its been two and a half weeks since I took my last pill, and my uterus has certainly realized and gotten persistent with the “HAVEBABIESNOW” efforts.
As much as I want children someday (three to be precise), I am in no place to have children now.
Settle down uterus. Settle down.
I had my consult with the specialist today, Dr. Y at Wake Forest Baptist Hospital. Despite the rainy weather, the two hour drive there, and two hour drive home, and the terrible brain fog it was a good day.
I enjoyed meeting Dr. Y and his resident. Sadly, I don’t remember the resident’s name, but he was pretty awesome. Dr. Y seems very knowledgeable about endometriosis. He seems more of a ‘Professor-type’ than your typical MD, but enjoyed that about him.
From this appointment we’re going to start a 6 week protocol of an aromatase inhibitor (Letrozole) with progesterone (norethindrone acetate) (and extra calcium supplements), before further discussing surgery. He doesn’t want to jump right into surgery because of my age, and because I haven’t had any prior abdominal surgeries- so he doesn’t want to start excising things and cause any problems that could possibly be avoided, especially since I haven’t had children yet and do want them in the future so don’t want to risk compromising my fertility in any way. Plus, given that possible clotting disorder in my family, its always best to keep surgery as a last option.
I was happy to hear he didn’t want to do depo or lupron. I refuse to do either of those because of the possible side-effects, and inability to quickly stop taking them if they make my ocular migraines worse. Plus, they generally aren’t effective- which Dr. Y completely agrees with.
I go back on June 9th to report how the drug protocol is working, and do an ultrasound and pelvic exam if surgery is still on the table. Hopefully during that 6 week period I’ll get some pain relief from the drug protocol and can avoid surgery all together (at least for now).
All and all, a very positive day.
the best liar you know 