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.
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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! This is the end of my second week in Florida. I'm finally getting a little more settled and into a routine which is good for the mind...and body!
I've tested out the bike machine in the gym, and didn't fall off! Ok it's stuck to the floor which makes things a bit easier but I still didn't fall off! Next week i'm tackling the swimming pool. But first I need to find out if there is a door leading to the swimming pool, other than the one that you have to reach by walking through the dining room. The thought of parading through there in my togs while people are eating...I don't want to be deported. Frozen meals; I thought they were going to be horrendous like they were in "the old days". But actually, they're pretty good! The hotel does dinners Monday to Thursday, so the other 3 days you have to fend for yourself. I'm getting used to eating alone looking like Nigel No-Mates down in the dining room. I keep myself entertained by watching the tiny wee lizards that scamper around outside the dining room window by the pool. It's actually very calming :) Anyway, Sugar Gliders. Why can we not have them in New Zealand? They're one of the cutest wee animals i've ever seen in my entire life, and I need some. They're quite happy to zip around on your arms or up your jersey and snuggle in. This is me and senor (or senorita) Sugar Glider at a flea market yesterday. Maybe once we convince Pharmac to fund ERT we can get a package deal - 1 Sugar Glider FREE with each treatment! Sign me up for both thanks! A huge milestone in my life. I've hoped and wished and prayed for "my first infusion day" for so long. I was never certain that I would get it, hopeful yes, but never certain.
Infusion morning was filled up with testing. This time it included a skin biopsy and an MRI. I went to sleep during the MRI! After lunch the enzyme was mixed and ready to go. It was 250mls that took around 2 and a half hours to administer. Apart from the needle insertion the rest is painless. Blood tests were taken often during the infusion and for the 24 hour period following the end of the infusion then I was allowed "home". One of the wonderful things about being here in Florida is that people know what to do with Pompe peeps! There is a bunch of us here in various stages of the disease, most of us taking part in various studies which hopefully will culminate in a cure one day :) We can hope right? It's really amazing to finally meet the people I have been talking with on the internet for so long. It feels like I know them already before I even meet them. They're all wonderful strong people and have a great sense of humour. I guess you have to when dealing with this type of thing, otherwise you could sink very quickly. Interesting fact: Masterton (where I live) has a population of around 20,000 people. The amount of students at the University of Florida, 50,000! The other night after our story aired on TV in New Zealand, we had many donations to help with costs while I am away. And, amazingly, someone has offered to pay for Steve and the boys to come to Florida for the holidays, flights and accommodation paid for. The person wants to remain anonymous. I cannot even begin to thank people for the amount of support and generosity. "Thank you" just never seems enough. I promise though to "pay it forward". Another very warm day here in Florida. A lot of thunder and some rain to go with it too.
Had another 6 minute walk test this morning then came back for lunch and did my laundry. When I came back to my apartment it had been cleaned - it's like magic! Tomorrow i'm being picked up in the morning to go and do more testing, and then after lunch my first infusion. Pretty exciting stuff. I've been reading for so long about others getting treatment for their pompe disease, it seemed like a pipedream for me. I will be overnighting in the hospital for this first infusion. This week I will try to find a place that can rent me a mobility scooter so I can get around when I want to, give me a bit of independance. The roads and drivers here are mad. Pretty much everything that I need to exist is close by. e.g. Supermarket, craft shop :) And I saw another squirrel on my travels today, SO CUTE!! Today I had a full day of screening. Tests included; lung function, 6 minute walk, EKG, muscle strength, bloods, physical and medical history. I'm sure i've forgotten something...
I was a little worried that my lung function might not have been good enough to get into this trial. But I am pleased to say that it was JUST good enough! WOOHOO! The people at UF are so lovely, you just could not wish for a better group of people to be looking after you. The weather is warm and rainy here today. It's very very tropical. Yesterday Brad the OZ took me for a drive around the town to show me the sites. The University campus is enormous - 2000 acres! Spanish Moss hangs from everywhere around the town and surrounds. I saw a squirrel yesterday, they're so darned cute. Wonder if MAF would notice if I imported a couple... Last night we went to "Cracker Barrel" for dinner with Monique Griffen. Had a great time. The shop in the front of the restaurant is totally awesome with all sorts of quirky cool stuff. We tried "grits" to eat. Always wondered what those were when you hear the word on the telly. Well it's kind of like porridge but made with corn instead of oats. On it's own it's kinda foul. But we mixed a little butter, salt and apple butter in it and it wasn't too bad. I don't think I will order any more though... It's an amazing feeling to finally be here in Florida after all the months of planning and hoping.
It was a long trip from our house in Masterton to get here. Air NZ was wonderful, they went out of their way to make my flight the best it could be. Travel isn't as easy as it used to be before pompe set in! It used to be no trouble to walk through terminals and gates and customs. Now it's wheelchairs, which is the way to go, much faster, but of course it would be preferable if you didn't need one at all. Also the days of booking an "el cheapo" flight to anywhere are gone. You have to go through the rigmarol of finding a carrier who will accomodate your breathing machine and it seems the ones who are more expensive are the ones who are most obliging. I guess that's why it's more expensive - you get what you pay for. I was picked up at Orlando airport at midnight by Katie from UF and Brad the OZ. Then a 2 hour drive from the airport to Gainseville. 2 hours seemed no time at all. I was able to skype with my family back home and see how they were feeling. Thank goodness for skype! After a few hours sleep I woke up at 8.30 am but decided to go back to sleep and woke up at 1.30 pm! Had a shower and coffee and a sandwich and Brad came to pick me up to take me to get a sim card for my phone. Then we went to dinner with Monique Griffen and Katie joined us for a drink. It is so cool to meet people face to face that I have spoken to over Facebook and skype for ages and ages. It feels like I know them before I have even met them :) It's also good to know that when you are having trouble standing up from a chair, or you can't walk fast, or you have to pick your own leg up to get it in the car - those people KNOW what that feels like and you don't have to explain anything, they just know... 8 more sleeps until I fly out to Florida. It's been such a long time coming that it doesn't really feel real yet. I'm excited to be going. But when I think of leaving my boys at the airport the excitement turns to total sadness.
Thank goodness for the modern communication era. Skype is great! If only the NZ government would keep up with the modern health era then I would not have to leave my family to save my life. Thanks NZ govt...fortunately for you I won't be here in the country at election time. As someone pointed out to me the other day, "there's no Key without a Lock". I've been asked to do screening for the medical trial in Florida starting on the 19th (20th NZ time) of August 2011. I'm so excited to have a date to work towards. I'm also extremely lucky to be considered for this life changing opportunity.
I continue to receive so much support from family and friends, and also from complete strangers. It is very very humbling. Thank you everyone xo |
AuthorAllyson Lock. Archives
February 2012
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