Hello from Europe 2 :)

[Wegetarian]

A quick update, went to the optician and had my eyes measured. My eye pressure was a bit elevated (21 if I remember correctly). She measured my eyes and with the correct lens setting I could see great. So guess I'll just need a pair of glasses. Have to say I'm relieved it wasn't some other damage to my eyes. Have an appointment with an ophthalmologist next week.

Also found out I get to go to a two week course for vasculites which is organized at a spa Rheumy, dietician, psycho-something and some excercise-dude will be present to give us loads of info. Pretty cool Too bad its a long time to be away from my family. Already checked they have wifi

[drz]

A quick update, went to the optician and had my eyes measured. My eye pressure was a bit elevated (21 if I remember correctly). She measured my eyes and with the correct lens setting I could see great. So guess I'll just need a pair of glasses. Have to say I'm relieved it wasn't some other damage to my eyes. Have an appointment with an ophthalmologist next week.

Also found out I get to go to a two week course for vasculites which is organized at a spa Rheumy, dietician, psycho-something and some excercise-dude will be present to give us loads of info. Pretty cool Too bad its a long time to be away from my family. Already checked they have wifi

If there are other Weggies there too, it sounds like a good deal for you all. Never heard of such a program before so tell us more details about it.

[Barbara N]

Talked to the doc today. Got some good news The blood tests from yesterday were all great, so I'll continue upping the MTX today to 15mg. She also said I can quit the antibiotics this week. Was a bit surprised by it actually, at the hospital they said I might be on them for life and last I talked to the doc I thought she said we'd try to cut them off after two months (which would still be over a month in the future). I even have three boxes in my cupboard since I thought I was going to be on them for still over a month. Well anyway, its my seventh consecutive antibiotics box (counting the IV at the hospital too) so I'm thrilled to stop eating them. Being cheap I was also annoyed at the probiotics my other doc recommended to me, as they would cost about 70 euros / month if I took them according to the prescription. Was going to switch to some cheaper brand, but hopefully I won't need any next week.

Was surprised that the doctor didn't get my message about almost fainting last friday night. The nurse I talked with said she'd forward the message to her, but I guess it got lost. She was a bit worried about it but since it was an isolated incident we let it pass.

Generally I'm feeling real fine too - we cut down the pred to 60mg the last time I saw the doc and I don't get the coughs as often. I think the squeezing pain in my chest doesn't occur too often either. Today I had some, but I kind of expected it since I only got about 4 hours sleep and I always feel worse when I haven't rested enough. Luckily I had nothing scheduled for today, so could just chill for the most of the day. The kids can drive me nuts pretty quick. I think its due to the stress when they are yelling and fighting, it seems to affect me more now than before and can tire me quite quickly.

I ordered the Neilmed squeeze bottle and battery operated thingy, didn't see any available locally and it was quite cheap to order them online from England so why not... Should have them early next week I suppose. Heh, in the morning I was using my neti can and was really short on time. I knew I had something in my nose and it was a bit painful to the touch, but as in a real hurry so knew I wouldn't have time to refill. Just poured everything in one nostril, but nothing would come out even when I blew my nose. So I tried one last time to blow my nose and out it came. Hallelujah! What a feeling. Well, maybe the squeezy thingy will be more efficient. It just feels that one fill of the neti can is never enough these days.

Also, my doc said its OK to just use regular tap water. Our water should be really clean, and I'm quite relieved I won't need to be hunting for some purified water or spending over 50 euros a month on bottled water at the pharmacy. I know I'll get flak from Phil, but I'll just have to live with that If a parasite does eat my brain you can tell me that you told me so. My doc is a specialist in nose/ear/throat issues so she should know.


Decided to join this support group that meets once a month, its not for Wegs but for people with rare Rheumy cases, was told there are always a few Wegs there so might be interesting. The organizer I talked with was very friendly, and recommended me this kind of retreat for people who suffer from vasculites. It sounded extrememly interesting, theere will be rheumy docs, dietary specialists and other experts and we'll get individual plans too. The only thing is that it lasts for 12 days! Its after my sick leave so not only will I have to ask for almost two weeks of time off I'll even need to be away from my family as its too far to drive back and forth daily. Dunno... My spouse said I should apply and she'll manage. My company is really cool about everything and have been extremely surprised so I'd be shocked if they said no. The last day for applying was three weeks ago though, so that might certainly be an issue. I'll call them tomorrow and see if its still possible. I mean the doc who treats me is real great and listens to me, but Wegs isn't in any way her speciality but she does consult the specialists. So if I go there I'd get to see a bunch of experts on vasculites. The person who recommended me the course also said she learned a ton there. So it should be an extremely informative trip. If I go I guess I should write a trip report to you guys too.

The vasculitis Foundation here in Spain has started a center like that. It is 100% free to people with vasculitis related illness and it is a luxury spa with everything include, you just have to get there and they pay all the rest. It is in Bilbao. The other side of the country for me but you can stay up to 10 day and it is for your family to relax as well and down stairs they have a complete medical facility including physiotherapist ENT Ophthalmologist, well every kind of Doctor you would want to see, all specializing in vasculitis type disease and auto-immune. I thought I would apply, it might be a nice get away for my husband and myself while being able to see qualified professionals.

[Wegetarian]

If there are other Weggies there too, it sounds like a good deal for you all. Never heard of such a program before so tell us more details about it.

Yes, there will be other weggies. There is a local FB group and I know at least one is coming. I think they organise it for 10 people and last year it wasn't even full, looks like its full this time. Figured I'd take notes there and keep you guys updated, hopefully not anything too difficult to translate.

Its organised in a resort owned by the Rheumy union, but its the government health care system that approves which patients get accepted and pays the bills. They can also offer individual courses, but this sounded really great as it was aimed at vasculites. There were some other courses too, which were offered at different spa's - like for couples on how to react to a long term disease. Those were like 2-3 day courses I think. I never seen a 3-week course before, but then again I haven't been looking.

Translated from the course info page:

- aimed for vasculites who would benefit from an active group course
- participants should be working, or need support in remaining at work or for returning to work
- the course aims to support the individuals rehabiliate (wonder if there is a better word for that in English) and to offer more information so that people could better support themselves with the disease both at work and in their spare time
- to try and find a suitable regular exercise

About the experts:
- A rheumy lecture and Q&A related to the diseases.
- A nurses group to give out more info about the medicines
- Behavioral therapy for day-to-day stuff and support appliances (joint paints or similar I guess)
- Group session with a psychologist about living with the disease and to find long term motivation in dealing with the disease
- Group with a nutritional therapist to deal with osteoporosis and to build a healthy diet
- Group with a social worker to get information about benefits, workplace related stuff and spare time activities
- private sessions with a physiotherapist, and if needed with a behavioural therapists, psychologist, social worker, nutritional therapist or for a foot-specialist.

I hope its somewhat legible. Dunno how much they pack into a day, I mean its like about 12 days in October and then mon-fri in March next year. I assume they have a decent gym and they must have a swimming pool as its a spa. I hope I'll be allowed to work out, swimming should at least be OK for me. Figured I'd try to get into better shape, hopefully I can start before that too. They also have Wifi so I'll of course bring my laptop (or two ).

I have to say I'm impressed they organise that kind of courses, its held annually so I was very lucky that I got in and at this time when I'm quite early diagnosed since its the kind of information I've been looking for. Must be really expensive to organise something like that. They even said its the last time they organise the course in that form Dunno if that means it will be different next year or what they are planning.

[drz]

I'm envious of such a program. It sounds great.

[pberggren1]

WOW!!!

We have nothing like that in Canada. We would have to coordinate all that ourselves and even then many of that is not available.

[Wegetarian]

Do you have some kind of rheumy unions that could be contacted and asked if they could have some kind of courses then? I do think 3 weeks is a bit of an overkill. I mean it must cost a ton to organise the course. The health care system even pays us to go, so when you take into account I'll miss three weeks of work it must be really expensive to have a course that long. I suppose the spa isn't really expensive though, as its owned by the rheumy union and the room prices on their pages seem affordable.

[mishb]

Hi Wedgie,

Nothing like that in Australia either........and I've never heard of a Rheumy Union.

How many people are there within your "pale blue dot" that are diagnosed with a vasculitis type condition and WG in particular.
It certain is a very interesting way for people to learn about the condition and to meet others in the same boat.

[Wegetarian]

Maybe you should start one then? I mean organisations like that get a lot of money from over here... So they can organise a lot of stuff... They even have a subsidised vacation to another child-friendly spa next year, and I figured I'd apply for that too as its very cheap room and board. We were there for two nights a few years ago and the kids loved it.

The rheumy place (not sure if union would be the correct term) said 108 people with Weg were registered with them. I guess not everyone will have joined though. Not sure about vasculites in general. I can let you know if I hear.

[Barbara N]

We do have something like that in Spain in Burgos. It is a Spa with every medical facility available downstairs. Your family can come and it is 100% free to people who have WG or Vasculitis. You just have to find your way to Burgos. I have been looking for the paper about it because I tjhought I might sign my husband and myself up for a 7 day trial, you can even get speech therapy. I can't ask the doctor who gave me the information because I fired her and denounced her for misconduct toward a patient.. I have the brochure somewhere so I will find it.