Long time no see....
well, looks like I'll have to stop being so slack with this blog and start writing lots of smaller posts like Becky does....sorry!
Anyway, as you all know I had this IV before I took off to see my friends here in Europe and at the start of it my lung function results weren't great, a mere 43% FEV1. They improved a bit during the antibiotic treatment to 48%. Not bad but I hope that's only the start.
I had of course a rather intense talk to my doctor who read my blog during my travels and was (like many others!) probably a bit worried at times...;)
After a coupla tests he told me that the reason for me not feeling too well isn't really the pseudomonas germ but more likely to be staphylococcus aureus which is very treatable. so I've changed medication, I'll try the new stuff called cotrimoxazol out for 3 months and in November I'll go in for another lung function and see how things are.
But my doc wouldn't be my doc if he didn't give me a kick in the arse again.
a) for not getting medical help while being sick in South Africa and
b) for not exercising enough.
well, I guess this good man has a point there...;)
So know I've been cycling and swimming almost every day and I really do feel a lot better. Let's hope it'll show in the next lung function results.
Another thing we talked about is diabetes. I think about 10% of CFers get it, they've been testing my blood sugar since I was 18 on a yearly basis and the results have always been a bit too high. But appearantly now they are super-high or at least high enough to check them again in November and then decide what to do.
To be honest, I hate any sort of needles (that's ONE reason I absolutely hate IV's !!) and I really, really don't wanna be diabetic. Also cos you have to watch what you're eating which will be a pain in the arse. But I guess any of that won't really be considered when it comes to my health.grrr....
So I'll just have to wait and see - and cut out as much sugar as possible, so no more soft drinks!
But hey, that's actually not too bad since I've gained 3 kilos since I got back from SA which really bothers me! I know, most CFers would be glad for every gram they put on but with my 1,65m 58kg would be perfect and at 59kg I'm still happy but at the moment it's more like 61 or 62 and that's not cool! Another rason for daily exercise!
OK - now I'm done with girly bitchin' about weight problems, hahaha
So - my trip: well, actually I took 2 trips to see my friends here. On the first one I went to South germany and Switzerland to see Steffi, Jule and Michel from "hotel times" when we were trainees.
Then I came back to Bremen for a coupla weeks and at the end of August I went to Holland to meet some friends I made during my time in Malaga, Spain. Visited my cousin Anton in Amsterdam and met his lovely girlfriend. Then travelled to Berlin to see Biensche, another friend in the tourism business and Doreen whom I met at the Kibbutz in South Africa.
It was great to see these guys, some of them I hadn't seen in the past 3 years so it was fun and very exciting!
The reason I finally went across the country to visit everyone was that when I was very sick in SA and didn't know whether I'd make it back, I was thinking of some close friends and I vowed to myself that if I'd get out of there, I'd go see them. it wasn't dramatic or anything but I've been travelling for 3 years now meeting loads of cool people and making frineds everywhere which is great but the ones who really know me and mean a lot to me I only see once a year if even that.
I'm glad I went, even though we all change and I guess time romantesizes things so maybe it's normal that getting together with someone isn't as exciting, fun, satisfying, emotional or touching as I might have remembered it to be a year ago. As much as I enjoy traveling like this, in a way I always dread coming back cos I wonder what it's like to see my friends again. Some friendships last and some don't.
The week with the Malaga-guys was awesome though. Some even came from Italy and Sweden! I realised how easy and relaxed things were for me, now that everyone knew about my CF, the medication and nebulising every day. Most of them had seen me do my treatment before but even the ones who asked were really cool about it.
One evening we were talking about our future plans and I told them about wanting to go to the UK but had only little time left until the weather over there would get worse. With staying longer in South Africa than planned, I had missed the surf season in Newquay which made finding a job there a lot more difficult.I was thinking of going somewhere bigger, maybe Bournemouth or Bristol but that would also increase my expenses on food and rent and we travellers are usually on a rather tight budget (means we're always broke!). And would I have the discipline while looking for a job and a place to stay to still do my daily exercise?
I guess it was obvious to see that I was very unsure of what to do, i also hadn't made up my mind about where to go this winter. Maybe back to Australia or South Africa..?
Perhaps we do have just too many choices sometimes.
Anyway, all of a sudden two of my dutch friends, Arja and Jelmer asked me if I wanted to stay with them for a while. In January they had bought a flat in Groningen which is a student city about two hours away from Amsterdam.They said, this way I could chill a bit, do my sports, maybe get a part-time job, think about future plans without any hassles and enjoy their company!
A great idea and I have to admit I was really touched by the way they considered all the CF stuff! The only time I had seen something like that before was between Jaanie and his friends when I met them in London and I remember wondering what it would be like to be more open about the CF with my friends.
With most of them, CF is never talked about, it doesn't really exist cos they got to know me as if it didn't.
OK, I'm rambling but I hope you get the point. :)
End of the story, I postponed my plans to go to the UK and will move in with Arja and Jelmer tomorrow!
I'm really looking forward to this, even though it won't be for more than a month.
At the end of October there's a seminar in Hannover about lung transplantations and I find especially the psycological aspects interesting. Just wanna get some information and approach the topic.
And finally, after more than 15 years of postponing and forgetting about it, I have managed to make an appointment for the nose polyp -OP! And to be fair, hadn't Jaanie been hassling me since London, I'd probably be living with these buggers another decade or so. Definitely a big cheers to you in Adelaide, darlin'!
But he even got his taken out again and I think it al went well so I should stop being such a wimp about it. I'm just horrified cos I'll get general anestetics and I'm worried about not waking up again! But maybe I've just been watching too much ER shows...
So on Nov. 1st is the admission into the hospital with all kind of tests (will get a lung function result prior to the OP to see if there are improvements.)and talks with doctors and on the next day should be the surgery...argh!!! Afterwards there'll be at least 3 to 4 weeks of discouvery in which I might squeeze another IV if necessary, hoping in december I'll be ready to head off again! Australia it will be for 5 or 6 months with possibly a visit to New Zealand.
Will probably fly into Sydney and if I can afford it financially, stay on the east coast for a bit and then head to Adelaide, see Jaanie and friends and if I can find a job there stay for a while.
but hey, that's still a long time from now so not really making any plans (since I change my mind anyways..haha)
Hope you all are doing great!
xxxJ.
ps.: Have uploaded more pics for you all.
Anyway, as you all know I had this IV before I took off to see my friends here in Europe and at the start of it my lung function results weren't great, a mere 43% FEV1. They improved a bit during the antibiotic treatment to 48%. Not bad but I hope that's only the start.
I had of course a rather intense talk to my doctor who read my blog during my travels and was (like many others!) probably a bit worried at times...;)
After a coupla tests he told me that the reason for me not feeling too well isn't really the pseudomonas germ but more likely to be staphylococcus aureus which is very treatable. so I've changed medication, I'll try the new stuff called cotrimoxazol out for 3 months and in November I'll go in for another lung function and see how things are.
But my doc wouldn't be my doc if he didn't give me a kick in the arse again.
a) for not getting medical help while being sick in South Africa and
b) for not exercising enough.
well, I guess this good man has a point there...;)
So know I've been cycling and swimming almost every day and I really do feel a lot better. Let's hope it'll show in the next lung function results.
Another thing we talked about is diabetes. I think about 10% of CFers get it, they've been testing my blood sugar since I was 18 on a yearly basis and the results have always been a bit too high. But appearantly now they are super-high or at least high enough to check them again in November and then decide what to do.
To be honest, I hate any sort of needles (that's ONE reason I absolutely hate IV's !!) and I really, really don't wanna be diabetic. Also cos you have to watch what you're eating which will be a pain in the arse. But I guess any of that won't really be considered when it comes to my health.grrr....
So I'll just have to wait and see - and cut out as much sugar as possible, so no more soft drinks!
But hey, that's actually not too bad since I've gained 3 kilos since I got back from SA which really bothers me! I know, most CFers would be glad for every gram they put on but with my 1,65m 58kg would be perfect and at 59kg I'm still happy but at the moment it's more like 61 or 62 and that's not cool! Another rason for daily exercise!
OK - now I'm done with girly bitchin' about weight problems, hahaha
So - my trip: well, actually I took 2 trips to see my friends here. On the first one I went to South germany and Switzerland to see Steffi, Jule and Michel from "hotel times" when we were trainees.
Then I came back to Bremen for a coupla weeks and at the end of August I went to Holland to meet some friends I made during my time in Malaga, Spain. Visited my cousin Anton in Amsterdam and met his lovely girlfriend. Then travelled to Berlin to see Biensche, another friend in the tourism business and Doreen whom I met at the Kibbutz in South Africa.
It was great to see these guys, some of them I hadn't seen in the past 3 years so it was fun and very exciting!
The reason I finally went across the country to visit everyone was that when I was very sick in SA and didn't know whether I'd make it back, I was thinking of some close friends and I vowed to myself that if I'd get out of there, I'd go see them. it wasn't dramatic or anything but I've been travelling for 3 years now meeting loads of cool people and making frineds everywhere which is great but the ones who really know me and mean a lot to me I only see once a year if even that.
I'm glad I went, even though we all change and I guess time romantesizes things so maybe it's normal that getting together with someone isn't as exciting, fun, satisfying, emotional or touching as I might have remembered it to be a year ago. As much as I enjoy traveling like this, in a way I always dread coming back cos I wonder what it's like to see my friends again. Some friendships last and some don't.
The week with the Malaga-guys was awesome though. Some even came from Italy and Sweden! I realised how easy and relaxed things were for me, now that everyone knew about my CF, the medication and nebulising every day. Most of them had seen me do my treatment before but even the ones who asked were really cool about it.
One evening we were talking about our future plans and I told them about wanting to go to the UK but had only little time left until the weather over there would get worse. With staying longer in South Africa than planned, I had missed the surf season in Newquay which made finding a job there a lot more difficult.I was thinking of going somewhere bigger, maybe Bournemouth or Bristol but that would also increase my expenses on food and rent and we travellers are usually on a rather tight budget (means we're always broke!). And would I have the discipline while looking for a job and a place to stay to still do my daily exercise?
I guess it was obvious to see that I was very unsure of what to do, i also hadn't made up my mind about where to go this winter. Maybe back to Australia or South Africa..?
Perhaps we do have just too many choices sometimes.
Anyway, all of a sudden two of my dutch friends, Arja and Jelmer asked me if I wanted to stay with them for a while. In January they had bought a flat in Groningen which is a student city about two hours away from Amsterdam.They said, this way I could chill a bit, do my sports, maybe get a part-time job, think about future plans without any hassles and enjoy their company!
A great idea and I have to admit I was really touched by the way they considered all the CF stuff! The only time I had seen something like that before was between Jaanie and his friends when I met them in London and I remember wondering what it would be like to be more open about the CF with my friends.
With most of them, CF is never talked about, it doesn't really exist cos they got to know me as if it didn't.
OK, I'm rambling but I hope you get the point. :)
End of the story, I postponed my plans to go to the UK and will move in with Arja and Jelmer tomorrow!
I'm really looking forward to this, even though it won't be for more than a month.
At the end of October there's a seminar in Hannover about lung transplantations and I find especially the psycological aspects interesting. Just wanna get some information and approach the topic.
And finally, after more than 15 years of postponing and forgetting about it, I have managed to make an appointment for the nose polyp -OP! And to be fair, hadn't Jaanie been hassling me since London, I'd probably be living with these buggers another decade or so. Definitely a big cheers to you in Adelaide, darlin'!
But he even got his taken out again and I think it al went well so I should stop being such a wimp about it. I'm just horrified cos I'll get general anestetics and I'm worried about not waking up again! But maybe I've just been watching too much ER shows...
So on Nov. 1st is the admission into the hospital with all kind of tests (will get a lung function result prior to the OP to see if there are improvements.)and talks with doctors and on the next day should be the surgery...argh!!! Afterwards there'll be at least 3 to 4 weeks of discouvery in which I might squeeze another IV if necessary, hoping in december I'll be ready to head off again! Australia it will be for 5 or 6 months with possibly a visit to New Zealand.
Will probably fly into Sydney and if I can afford it financially, stay on the east coast for a bit and then head to Adelaide, see Jaanie and friends and if I can find a job there stay for a while.
but hey, that's still a long time from now so not really making any plans (since I change my mind anyways..haha)
Hope you all are doing great!
xxxJ.
ps.: Have uploaded more pics for you all.
posted by Janka @ 3:59 PM
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