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".