[*~aurora~*]

Alright, slap some advice on me! I'm going to be in China (mostly Beijing) for 6 weeks this summer, if all goes well! What advice do you have for me?

some details:

I'm feeling really good right now, knock on wood. Should I plan to bring my wheelchair, or just my walker and one crutch? Should I bring the heavier walker with the seat, or the lighter walker without one? I'm thinking the heavy one and one crutch.

should I get shots? I was perfectly healthy and normal until I got my shots. as a result of the first round, I have partial seizures and brain abnormalities and fatigue... as a result of the second (at 16) I got really sick, developed heart problems that still bother me now, and gained 50 lbs in 6 months. After the third round I started having fibro-like pain that is apparently not fibro. So every time I get a shot I seem to get a permanent new illness that far outweighs the benefits of getting a shot! for 99% of the time, I honestly think I'd rather just risk it than guarantee myself a permanent reduction in my already limited quality of life. But there is that 1%...

Is there anything about China I should know? What supplements, foods, etc. should I bring? Will they hassle me about bringing a hug thing of theratears? I'm thinking about using the nasal filters to try to avoid any airborne pathogens and also the pollution... does that sound like a good idea?

I'll be living in a college dorm with a water boiler. Is it ok to use the boiler for teeth washing and stuff? Or do I need water from the bottle?

Thanks for any answers you might have! ^_^

 

[KarolH]

WOW China. What a awesome experience for you. I do not have any advice for you however I wanted to jump on here and let you know that I hope you have a really, really, really great time.

Takes lots of pictures.

 

[oesa]

That sounds like an awesome trip. I've never been, but I have done some travel in less-developed countries, so I'm happy to share what I've learned.

See a doctor at a travel clinic to talk about what precautions you need to take. It's a good idea to see your regular GP or rheumy ahead of that visit, to get their advice on vaccinations generally (particularly the live ones.) The travel clinic can advise you on specific conditions in the area you're travelling to.

I got the works in terms of vaccinations for my trip to Peru last fall - Hep A and B, typhoid, a booster of tetanus, and the new one for travellers "sickness" if you know what I mean.:worried: I didn't get the yellow fever shot - wasn't going to be in an endemic zone, and the risk of the live vaccine was more than I wanted to take. The travel clinic can also advise you if there are vaccinations you MUST have in order to enter the country - some countries do have mandatory ones, so it's good to check - I had a doctors letter giving me permission to not have the yellow fever vaccine when I travelled in an endemic zone , so that may be an option if you decide to not get the vaccinations.

I also took a course of broad-spectrum antibiotics with me, just in case of a severe case of gastroenteritis. The travel clinic prescribed them.

Speaking of which... I did NOT drink the water, not even to brush my teeth. Don't know the state of Beijing's water treatment facilities, but you should definitely check. If it's at all questionable, bring a portable water filter with you, (you can get them at camping/travel stores) and USE IT RELIGIOUSLY!!!! It's kind of a pain, but far less than a bout of GI illness. You can get purification drops too, but I think they're not advisable for use on trips over a couple of weeks. And by "water", I mean anything prepared with water as well - you can get sick from raw vegetables washed with dirty water, or ice cubes not made from purified water, so if I was in any doubt, I didn't eat/drink it. I was the only person in my group of 7 this fall that didn't get sick - I was also the only person who had gotten the anti-travellers-diarrhea vaccine, so who knows why - but I was also a lot more careful than everyone else (bordering on paranoid some might say...)

If you will be carrying medications (pain medications in particular), make sure you have a letter from the prescribing doctor verifying that you need them for a medical condition.

My other advice? Bring a spare battery and memory card for your camera, and have a ton of fun!

Cheers,

Lisa

 

[*~aurora~*]

sweet, thanks. There are no required vaccinations, so unless someone knows a really crazy widespread disease I'm not planning on getting any shots for the trip. I'd rather risk it and be able to actually function, you know? There's always hand sanitizer. Even when I DO catch things going around, I still get less sick than with the vaccinations. Since that's the only thing guaranteed to make me sicker and dependent on my wheelchair, I'd like to avoid it if at all possible.

Thanks for the advice, though! ^_^ Looking forward to my trip.

 

[orangelily]

:woohoo::woohoo: what a brilliant adventure. Enjoy Enjoy

 

[pollianna]

ooooh rachael, what an amazing adventure :bigsmile: I hope you have a great time

 

[Kav]

Hi Rachel,

Having just come back from a year living in Beijing, I can offer some insight. I too was living in college dorms, so provided you are in dorms designed for foreign students (they segregate chinese students from foreign students at the universities, be thankful for it, foreign dorms are much better!), then I found there was no problem using tap water to wash and brush your teeth with, but I would advise against drinking it. I had a water tank (like those you get in offices) or I boiled water/bought bottled water.

I had a flare up whilst in China, and I would strongly advise any medical help should be sought at a private hospital. Sino-Japanese Friendship Hospital or Beijing United Family Hospital are good. I tried a public hospital's foreign wing, they had no clue what to do with my Lupus, I almost flew home! However, these hospitals are expensive, so insurance is vital. Being British, I had trouble getting coverage for all my Lupus, as it's an existing condition. Americans seem to be able to use their American insurance policies out there, depending on their policy. If you have any drugs you use regularly or intermittently, take them with you. Although you can get the same drugs out there, I find that they are expensive and the formulations are not as up to date as the drugs you'd get at home. I took 6 monthly supplies with me.

I am very photosensitive and Beijing is very hot and sunny in the summer, usually in excess of 35 degrees C, so if you are photosensitive, usual advice. Cover up, use a sunscreen from home. The ones sold in China are not reliable enough, something dodgy with what's in the bottle and what the label says. You can also buy UV protective umbrellas in any supermarket, which were a life saver for me last year.

As for the air, it's bad, but not awful. The only time I had an issue with the pollution was when I went for a run, then my lungs burned. I would take some protection for the pollution incase you are affected by it. Although I was there during the olympics, when they were trying to clean up the air, so it may well be worse this summer. The pollution is worse the more central you get. I was living in the university district which isn't particularly central. The air is cleaner there.

I hope that helps. If you have any questions about Beijing, feel free to ask!

Kav

 

[*~aurora~*]

Thank you so much for your reply. Unfortunately I cancelled the trip due to red tape and my illness (I don't have lupus, it turns out, but a bone marrow disease like leukemia that was causing symptoms like lupus including the rash, hence why I haven't been posting on here), but I appreciate your time all the same!

谢谢你！

 

[Katharine]

Hello aurora,

I'm so sorry you had to cancel your trip, that must be very disappointing.

Hopefully they will be able to get a handle on your disease and you can go at another time

Katharine

 

[GCCH]

aurora, sorry to hear you weren't able to go to China. (I hope you are doing ok.) I've been meaning to reply to this thread as I'll be going to China at the end of this month and have also spent 3.5 weeks there 8 years ago. Anyway, I'll still post a bit since this might be of interest to others.

For my trip this time, I'm getting my Hep A & B titers checked and the shots if necessary. I'll also be bringing all my meds (of course), LOTS of Imodium (learned the hard way last time), acetaminophen, cortisone/antibiotic creams, and a course of antibiotics. I plan to use the tap water for brushing teeth, etc., as I did so last time without any problems.

Kav, how did it all work out with your flare? Would you say the care you received at the private hospital was comparable to what you would have received in a Western facility? I will be spending more than half the trip in Shanghai, so hopefully if anything were to happen there, I would be able to find good private facilities. Insurance is also an issue for me. I've only been able to find one insurer (Travelsafe - covers US and Canadian residents) that will cover pre-existing conditions that have not necessarily been stable during the previous 90 days; you just have to be fit to travel at the time you book your trip. And thanks for sharing that bit about the UV umbrellas being available; I plan to pick up one of those ASAP!

 

[KarolH]

I am so sorry you were not able to make the trip. It is very frustrating.

I also had to cancel a April trip due to illness and it really stinks.

I hope you will be ok and eventually make that trip to China.

Keep us posted as to how your doing/feeling.

If I can do anything for you, just shoot me a pm.:wink2::wink2::wink2:

 

[*~aurora~*]

Thanks. I haven't wanted to post here since a) I dont' REALLY have lupus (my bone marrow disease mimicked it quite well, though) and b) I really am doing better. I just wasn't sure if I was QUITE "better" enough for China, and there was too much stress involved. I actually spoke to the VP of my college about it. As long as I don't stress out, laugh a lot, relax, sleep enough, exercise, etc. I seem to keep the disease at bay. Well, I say that, but I think there's a lot more involved, like maybe God. I don't know, but I count myself very lucky to be getting a second chance! I'm taking full advantage of it and hiking and walking and the things I couldn't do for so long. Healing takes time but I'm praying and hoping and crossing my fingers I'm healing for good this time!

 

[elle-co]

Glad to hear that you are doing better. I hope you can do that amazing trip some time in the near future.
Hoping and praying you continue to stay well.

Hugs
Elle x

 

[*~aurora~*]

Thanks. I'm actually flying up to Toronto to see my boyfriend graduate college in about a week and a half, and he said if I'm up for it we can go rock climbing! I love rock climbing, and I was just barely starting to get into it the few years before I got super sick. I don't know that I even want to go to China anymore... seems a little scary, and I can always look at movies (Tomb Raider II, anyone?) or practice my Chinese in Toronto. I'm studying French next year in school and so I think for my honeymoon or some other extended trip I'd like to go to England and France and see what it's like. I don't care about the Eiffel Tower or Big Ben, I want to see the pubs and houses and streets and countrysides! But anyways, thanks for all the help everyone.

 

[Kav]

Rachel - sorry to hear both bits of news. 祝你身体尽快健康。

GCCH - The private western hopsitals are comparable to western ones. The equipment is up to date and the staff all speak good english. The one I went to was better than some high end hotels I've stayed in. You'll be well taken care of in shanghai. It'll only be a problem if anything serious happens far from a big city. best of luck, and have a great trip!

 

[GCCH]

Thanks, Kav. That's reassuring. aurora, enjoy your visit to Toronto; that's my city too!