I had a varied and interesting week this week. A few ups and downs. The main event of course was my 3rd infusion. It went well again, no reactions. The Benadryl given intravenously really makes me tired so I was sleeping through the infusion again, when I was woken from my slumber by a few sneaky people who carted me off to one of the conference rooms for a surprise birthday party! It was so lovely. We had a beautiful chocolate ganache cake. I got to wear the princess crown for the day!
I had a skype call with my son Ben’s class at Opaki School. All of the kids sang happy birthday to me. What a great bunch of kids they are. What a great school that is. And thank you to Mr Pallister for allowing me to have a chat to you and the kids via skype, it’s a lot of fun.
For my birthday dinner the OZ and I went out for tea to a place called 101 Downtown. We were the only ones in the whole restaurant! I had Chilean Sea Bass on mango salsa. It was gorgeous! It was nice to note that they had NZ lamb rack on the menu. I wanted to try something I had never had before so went for the bass. They also had Bison burgers! By the way the lamb rack was $26 for a whole rack, and $20 for a half. Not sure how that compares with prices in NZ but would be interested to know.
More on the food bent…you have to be on your toes here when ordering food, an entrée in NZ is called an appetizer here, and an entrée here is the main meal. Tricky! And the Marmite you get here is NOT like the Marmite you get in NZ!
Jenna and I at my party.
Jenna is a Physio Therapist at Shands Hospital.
You may notice that i'm still "mid-infusion"!
Critter of the week…
Love bugs! I’m going to have to consult with Wikipedia about these since I have never seen them before and I don’t know anything about them. But they are all over the place at the moment and just something a little different for someone from NZ.
The lovebug, Plecia nearctica, is a member of the family of march flies. It is also known as the honeymoon fly, kissingbug or double-headedbug. The adult is a small, flying insect common to parts of Central America and the southeastern United States, especially along the Gulf Coast. During and after mating, adult pairs remain coupled, even in flight, for up to several days.
This species' reputation as a public nuisance is due not to any bite or sting (it is incapable of either), but to its slightly acidic body chemistry. Because airborne Lovebugs can exist in enormous numbers near highways, they die en masse on automobile windshields, hoods, and radiator grills when the vehicles travel at high speeds. If left for more than an hour or two, the remains become dried and extremely difficult to remove. Their body chemistry has a nearly neutral 6.5 pH but may become acidic at 4.25 pH if left on the car for a day. In the past, the acidity of the dead adult body, especially the female's egg masses, often resulted in pits and etches in automotive paint and chrome if not quickly removed. However, advances in automotive paints and protective coatings have reduced this threat significantly. Now the greatest concern is excessive clogging of vehicle radiator air passages with the bodies of the adults, with the reduction of the cooling effect on engines, and the obstruction of windshields when the remains of the adults and egg masses are smeared on the glass.
Well there you go, all you ever wanted to know and more about Lovebugs!
Also this week, Mike, whom I mentioned in last weeks blog, has finally gone back to his home state of New Jersey to continue his rehabilitation before going home to his house. Hopefully he will be HOME in a few weeks time. How awesome! He did travel in style back to New Jersey, he took a Lear jet! Good luck Mike, we will be seeing you soon.
Mike went home all decked out with his Gators stuff! I hope he didn't forget his "murse" LOL.
Another one leaving, although only for a couple of weeks, was Brad the OZ. We managed to ditch him at Orlando airport on Wednesday. He’s left me with the car…I haven’t shifted it out of the car park yet, I’m not sure if I want to either! Katie, who is one of the beautiful people at the University of Florida, was taking Brad to Orlando so I caught a ride to take in the sights. I saw where Mickey Mouse lives over yonder. We went and had a browse around a mall, WOW it was gorgeous. There were fountains and beautiful things everywhere. Since we were there so late in the day for the airport, Katie and I had dinner there at an authentic Italian restaurant, and were served by a Spanish guy LOL. Ah well, the service was great and the food was delicious.
When Katie and I were driving to the mall after going to the airport, she pointed out this sign.
Who knew there was a religious theme park!? Not sure what rides they have, maybe donkey rides? Anyway, I looked it up online and if you are keen to see what it is all about, here is the web address;
Katie says she goes to the Mall at Millenia for her Holy Land Experience! I have to agree, it was Heaven!
We’ve had a couple of good storms this week. They all seem to have a name now. Years ago you just used to have a storm, just a plain old storm. Now they’re all named after someone. This reminds me…when I first came here there was Hurricane Irene. This caused huge laughter among the family back home. Not because they thought it was funny there was a hurricane coming, but because my mother in law's name was Irene. And she really did not like me! So they joked that even though I had come all the way to America, she was still following me around! Scary for me!
When I was in the supermarket earlier today on Road Runner, an elderly lady in a motorised shopping trolley chased me down in an aisle and asked me all about my scooter. She thought it was great and wanted to know where she might get one, and what make and model it was etc. So I wrote it all down for her. I hope she gets one soon as she seemed very excited about the thought of having one. I also nearly flattened some poor guy as he walked out of the pet shop this morning while I was whistling past. In my defense he was walking quite quickly...! MEEP MEEP!
Thank you to everyone back home, those whom I know, and those I don't know personally, for your continued support and for making this time in our lives so much easier to get through. I truly feel thankful each day for everything you have all done for us. Much love to you all. I dont know how I can ever pay you back, but I can and will pay it forward.
I’m still 46 until tomorrow ;o)
Finally I get to be younger than you! Hahaha!
Farewell Mike! Note the snazzy Gator colours there?
On Wednesday we attended a special luncheon for Mike. Mike also has Pompe and he has been in Florida receiving a diaphragmatic pacemaker to help him breathe on his own. This should enable him to get off his ventilator and go back to live with his family in his own home. Mike is from New Jersey. He has only been able to go home to his house twice in over 4 years, and that was just for brief visits of a few hours. The rest of the time he has been hooked up to a ventilator in a palliative care hospital. Mike has a great sense of humour, to have been through what he’s been through and still be laughing, I gotta take my hat off to him! The lunch was a send off for Mike as he heads back to New Jersey to a rehabilitation centre to get his breathing and muscles stronger before he goes home. Bless you Mike, I know you’re going to make it back home soon!
On Thursday afternoon the OZ and I headed out to Paynes Prairie. This park became Florida´s first state preserve in 1971 and is now designated as a National Natural Landmark. Over 20 distinct biological communities provide a rich array of habitats for wildlife and livestock, including alligators, bison, horses and over 270 species of birds.
The park is open until sunset each day. I guess it depends on what time of the day and also what season you go in, as to what you are most likely to see. It is a beautiful place. We saw alligators (ok 1), lots of different beautiful birds including an Eagle, an armadillo just wandering along minding its own business on the side of the track, loads of squirrels and some very large spiders! I HATE spiders! I was looking at an extremely large one on my way past on Road Runner, it was eating something in its web, I think it was an elephant. When I pointed it out to the OZ he acknowledged he had seen it, but he was seeing a different one, and pointed even closer to my face! I hadn’t noticed the one a LOT closer to me! This one was only slightly smaller; its dinner of choice was a wildebeest I think. We saw wild deer with babies, and wild horses too. This is a breed which belongs in this area called the Florida Cracker Horse. These horses were first brought to Florida by the Spanish in the early 1500s. It’s so lovely to see horses in the wild.
The Florida Gators play Tennessee down at “The Swamp” tonight. There have been big RVs rolling into town, cars covered in Gators emblems and flags everywhere. It’s great how people really get into game day over here! I had to buy a Gators T-shirt so I didn’t look like such a foreigner! Now I fit right in until I say something.
Note: Ben Hill Griffin Stadium (popularly known as "The Swamp") is the American football stadium for the University of Florida and the home field of the university's Florida Gators football team. It is located on the university's Gainesville, Florida campus. Attendance for the Gators' home football games regularly exceeds 90,000 persons.
That's A LOT of persons!!
Hidyhi from Florida again. Where did this week go?? WOW!
A mixed bag this week...
Tailgate Party - If you look that term up on Wikipedia you will find this...
"In the United States, a tailgate party is a social event held on and around the open tailgate of a vehicle. Tailgating often involves consuming alcoholic beverages and grilling food. Tailgate parties usually occur in the parking lots at stadiums and arenas, before and occasionally after games and concerts. People attending such a party are said to be tailgating. Many people participate even if their vehicles do not have tailgates. Also, many people don't even go into the game and just go to the tailgate to party. Tailgate parties have spread to the pre-game festivities at sporting events besides football (e.g. basketball, hockey, soccer, and baseball) and is also used at non-sporting events such as weddings and other non-sports-related barbecue gatherings".
I attended my first ever tailgate party yesterday (Saturday). It is indeed exactly what Wikipedia says. I could not imagine local councils in New Zealand ever letting thousands of vehicles of all shapes and sizes congregate on grass verges and in parks, under trees and unload all of the goodies like tents, tables, TVs, BBQs, fake trees for putting your empty beer bottles on (these are to keep flies away by the way. The motto is "Fear the Brew", seemed to work, there were no flies, although maybe there wouldn't have been any in any case, but that isn't the point..), LARGE blow up 'Gators, gazebos, chairs, chilly bins, food, food and more food and of course beverages. ENORMOUS RVs were rolling in one after the other after the other...even a car the shape of an alligator drove past! It had a tail and scales and everything! Everyone was there for the same reason, the Florida Gators. It is a family event too, not just for adults. There were plenty of kids there enjoying frisbee and remote controlled cars and kicking a ball around. It was a great day. First ever tailgate party, and I hope to go to more.
One thing you have to learn in Gainesville is the "Gator Chomp". This is the action you perform at a Florida Gators football game. The Gator Chomp is done by fully extending your arms, one over the other in front of your body with the palms facing toward each other. Then you move your arms apart and together to symbolize an alligator's chomping mouth. This gesture is used by Florida Gators fans to intimidate opposing players and fans. I haven't been to a game yet but I hope to. In case I do, I have been practising my "chomping". CHOMP CHOMP!
There are only 7 Gators games played here in Gainesville each year. 2 have been played, but this weekend coming is the first BIG game. It will be against Tennessee. More on that in a later blog...
On the way to the tailgate yesterday we went past a lake, a lake very close to the road's edge. When I say "close", I mean ONLY a few metres. This lake is in a very built up area, not way out in the wopwops. Although I guess the houses were built in the wopwops... Anyway, it's no wonder these things end up in some peoples swimming pools! Pretty awesome to see them out in the wild when you're just driving along an average neighbourhood street. Not something you would ever see in New Zealand...well hopefully not! Henley Lake would never be the same!
Today I went for a tootle on "Road Runner", as my scooter is now affectionately called, and it was 38c! Whew! I went for a swim the other day, in a POOL, NOT a lake! But stupidly I picked the coolest day of the summer and the water was a little chilly. If it is this hot tomorrow I will don my water wings and take the plunge again.
Lastly, but certainly not leastly (is that a word?). This week my twin brother Bruce was also diagnosed with Pompe Disease. He's less affected than I am and in fact would probably never have gotten tested if it wasn't for the fact that I have been diagnosed. So this is a good thing for him as it means that he can HOPEFULLY get treatment before symptoms really get a hold on him. When I found out what I had I was relieved to find out. When I found out Bruce had the same thing, I was totally gutted...Now i've got even more reason to get Pharmac to do the right thing! No one is allowed to be mean to my brother!
Another infusion done and dusted. I slept through it! The nurses and doctors at Shands Hospital are so wonderful. It's a pleasure to be there among such lovely people.
I went along to the hospital again today, and one of the nurses asked "where's Russ"? Russ, is our bear who travels the world, usually with my husband Steve. Steve is in the Navy so he travels a LOT. Russ has had his photo taken in all sorts of places world wide but had never been to Florida, therefore he was itching to come along on this trip. Anyway, Russ just happened to be in my purse so Betsy, the lovely nurse who has taken a shine to Russ, gave him his very own Florida Gators jersey and blanket :) So now he's an official Gators supporter! Thank you Betsy, I think that's awesome! :)
Today while up at the hospital the OZ and I went to see Mike Stanzione. He's looking very good! He may be off to New Jersey next week. Next step is home eh Mike! If anyone deserves it, it's you my friend :)
Woodpeckers - even power poles aren't safe! I saw two of them yesterday having a crack at a power pole, they're so cool looking. I have heard them in forests tap tap tapping before, but never actually set eyes upon them. I think I will add them to my inventory of what I would love to bring with me back to NZ. We've got some huge trees out the back of our place that I'm sure Woody and his mates would be quite happy in. Maybe they will even chase those pesky magpies away!
For information on Woody Woodpecker go here: http://pelotes.jea.com/woodpeck.htm
Today's top blog tip - Sandfly inhalation whilst mobility scootering - avoid it. Fortunately I'm not a vegetarian.
This week I grew a new pair of legs. A mobility scooter. Why did I never have one of these before?? I'm asking myself that question. So much freedom, so much fun. So many people to run... oh, i mean so many people to say "hi" to on my way around the town :) I can go 4 miles per hour and even faster if i'm going downhill with a tail wind. There are not a lot of hills here in Florida though...which is fortunate since I didn't charge it one night and on my escapade yesterday I had to push the scooter home. Stop laughing.
Anyway, St Augustines, who's been there? ME! Pick me pick me! Me and the OZ went there on Friday. It's a beautiful beach with a pier you can walk out onto and go fishing. We didn't fish as we had no fishing gear. We saw a turtle swimming in the water, that was cool :) There were lots of schools of small fish swimming around and lots of people surfing and swimming. It was a gorgeous day and I even got a bit of a tan. St Augustines is a very old town full of great little shops and old buildings, including the oldest wooden school building in the USA. We thought it would be great to go up the lighthouse, but when you have the walking skills of a bucket it's not the best idea you can have.
If you'd like to know more about this great old town visit this link: http://en.wikipedia.org/wiki/St._Augustine,_Florida
Top tip for this blog: Never ride a mobility scooter into a head wind with a skirt on. Sorry to those people down at the shopping centre today...
Hello again from Florida. Gator country. No I haven't seen any yet, but I bet I do sooner rather than later. Can't wait to see them out in the wild. Someone told me the other day not to go swimming in any streams or ponds etc. because of the alligators and the Water Moccasins, otherwise known as Cotton Mouth snakes. OK you do not have to tell me twice! Water Moccasins are not comfy shoes you wear in the water, they are highly venomous snakes. Check out the link if you feel your curiosity getting the better of you ;) Water Moccasins link - careful they don't BITE YA!
It's still very warm here. I went for a walk last night at 5pm and it was cooling down a little by then. I love watching all of the little tiny lizards scooting around over the footpaths and in the gardens.
Just got the fright of my life. Went to get a receipt for my accommodation and on it were 3 calls to NZ. One to my family which wasn't answered, and 2 to my Dad, one which wasn't answered and one where I spoke with him for about 10 minutes. The unanswered calls cost over $17, each! But wait, there's more! The 10 minute call cost $77!! So, unlike ET, I won't be phoning home any time soon!
I've discovered "Michaels" craft store...heaven on a stick for me :) I gathered a few scrapbooking supplies so I can start the scrapbook of my Florida trip. Well, more than just the Florida trip, my whole Pompe journey really. Florida is but one part of that. I'm also going to try to resurrect my drawing skills. Resurrect might be the wrong word, they were never that great to start with, shall I say improve my drawing skills :) I will have plenty of time here to try it anyway. I brought my pencils with me all the way from NZ. Sat down the other day to sharpen them so I could draw, but did I bring a pencil sharpener...noooo. I won't be phoning home for one either!