Hello from Europe 2 :)

[pberggren1]

I should move to Europe and then we will all go to this Spa in Barbara's country......

[Wegetarian]

I should move to Europe and then we will all go to this Spa in Barbara's country......

Hey! What's wrong with my spa?

Yeah - I have to agree a vacation is Spain doesn't sound half bad at all. I wonder if its open to non-residents. I remember Gliders saying he goes to Spain for vacations at times.

Darn such a busy day today. First went to blood tests, went there 7am when they opened since I had to be fasting and couldn't get my morning coffee. Then went to the hospital to pick up all documents about me (need them for the specialist and for the retreat). I read them through and was surprised that they had tried to send me to a rheumy at least three times, but I was rejected each time. I haven't received a proper reason for it - just that they are busy. But this does surprise me, I'll certainly discuss it with the specialist once I see him.

Then I went to the psychotherapist, was a fairly interesting session. We mainly discussed my background and it seemed she felt more sorry for me than I do. Was nice to hear that she thought it was an excellent idea that I go out for lunches with friends, since I used to get a bit of a bad conscience by having fun during the day and then being exhausted when the kids come home. (Now I have more energy, so not really an issue). She also thought it was a good idea I see the specialist, and was surprised they didn't send me to one. For our next session we talked that we'd discuss how to talk about the disease to my children, as we haven't said almost anything and its certainly affecting our first-born. She also said my spouse would be welcome to join, as I had said it has been very rough for her with me being sick the entire summer.

After that I went to this really good Nepalese restaurant that we sometimes frequented when I was working nearby... yummy!

By the time I got home I was pretty beat, went to pick the kids and then for a nap. One hours sleep did wonders, as I had wondered if I should skip a support group meeting for people with rare Rheumy-diseases that was held in the evening. So I went there, and we were about 20 people of which 3 had Weg. There were a bunch of other vasculites too. I have fairly mixed feelings about it. The new members presented themselves, but one member in particular couldn't stop talking about her issues. There were some good general info, like about upcoming lectures about diets and how rheumy meds interact. Still felt like two thirds of the time was spent listening to someone telling how badly they were treated by a doc or how the health care system doesn't work for them. Dunno, maybe I should contact the organizers and ask if those could be discussed in smaller groups (at the end Wegs were put in one group etc) since it just doesn't feel like a good use of time. A few of the members were very nice, but they had the wrong vasculite

[pberggren1]

Okay, to Norway it is as well.......lol

[Wegetarian]

Last week I called the hospital to discuss my impaired vision, and the nurse told me to discontinue the meds until I have talked with my doc - and that she doesn't have time for a phone call until our reserved time today. Just had a talk with my doc, she had hoped that the nurse could have informed her about the talk but they did enter it into their system so she knew I had called. A bit annoying... I was there on Monday too to pick up some papers and asked again if she would have time earlier, but was told no.

So since she isn't a rheumy she will consult one and inform me next week if I should switch meds. I have an ophthalmologists appointment tomorrow, and she wanted me to send the results. I also asked if I should take a flu shot and a shot called Prevnar which prevents some kind of pneumonia and if my bone density and vitamin levels should be checked. She did think those were good questions and will ask the rheumy. Its great that there is so much info available to us, but its really frustrating to have to ask the doctor if I should have some tests taken. I think it would be their job to find out what needs to be done. Feels like the game broken telephone where I have to ask the questions to a rheumy through another doc. Anyway, she told me she will fax the info to the rheumy but won't be in the office tomorrow so I should know more on Tuesday.

She also told me to come to the hospital or call if my condition changes, I told her that I don't think they'll know about my issues and she agreed. I mean when I called them about the meds they did seem a bit confused.

On the bright side I've had a ton more energy lately and don't get as tired. Yesterday I walked 6km and helped sort out my parents computer trouble for a couple hours. I don't think I could have manged with that a couple weeks ago, but didn't even feel tired after that. I did sleep a nice nap a bit later though. Naps are awesome

My nose has been a bit more clogged lately, before I could usually do with just one rinse in the morning - now I feel I need to do it three times.

Anyway, I'm glad I got the appointment to a private ophthalmologist tomorrow so I should know more about that then. I also got an appointment to a private rheumy for Tuesday so I'll be able to talk to one for the first time. With any luck I could move my treatments to him and have the insurance foot the bill. Would be so nice to get out of this ridiculous situation at the public side. I don't really know why they didn't direct me to a rheumy. From the papers I got from the hospital I noticed that they had at least three times tried to send me to the rheumy hospital but were denied.

How many people are there within your "pale blue dot" that are diagnosed with a vasculitis type condition and WG in particular.

Michelle, I noticed these statistics in a magazine they send to people with rare rheumy diseases. Its not like an official lists of all diagnosed people, but the persons who have joined the Rheumy assosiations rare diseases mailing list and told about their diagnosis. I think they said something like 108 for Weg's when I talked with them on the phone. I would assume the vasculites row (second lowest) would be other vasculites than those listed. I didn't bother to translate it, as the names are fairly similar in English (and if not then I have no clue what they would be )

[Wegetarian]

The eye doc is sending me to a few more exams. They will messure my eys pressure morning, noon and night to see how much it differs and some kind of vision test. I guess its mainly to give some kind of baseline results, but also to check that I'm not developing glaucoma and that my optimal nerve isn't getting damaged.

I was told I could either get glasses or not, he meant that my vision is good enough that I can manage without glasses. He wasn't really sure if my vision would keep changing either.

Went to the opticial and ordered their cheapest glasses. I bet Alyssa is going to be annoyed that I chose the cheapest plastic frames instead of those high-end titanium frames I guess she recommended. Felt so so weird to try out glasses since I've never used them. They recommended that I'd get the harder surface and anti-glare coating, but being cheap I just got the most basic plastic lens. I'm amazed they can sell decent looking frames with custom made lenses for 29 euros. I'll get a decent pair once its more certain that my vision won't change. The metal frames they had for that price were fairly ugly, and I think I might use some very light ones for long time computer use.

Now I'm off to Ebay to search for some cool case to keep my glasses in.

Still feeling a more exhausted than on Wed and the week and a half before it. Maybe its because I've skipped the MTX twice, dunno.

[mishb]

Michelle, I noticed these statistics in a magazine they send to people with rare rheumy diseases. Its not like an official lists of all diagnosed people, but the persons who have joined the Rheumy assosiations rare diseases mailing list and told about their diagnosis. I think they said something like 108 for Weg's when I talked with them on the phone. I would assume the vasculites row (second lowest) would be other vasculites than those listed. I didn't bother to translate it, as the names are fairly similar in English (and if not then I have no clue what they would be )

Wow, that is an amazing list.
I wonder what those 24 people with Muut have (I tried to google it but will not share what I found )

We don't have any such lists like this in Australia - do we Andrew???

[Wegetarian]

Ah, sorry. "Muut" is others.

[Wegetarian]

Went to a private rheumy today, what a relieving appointment. I asked around who would be the best rheumy that takes patients and I think three people mentioned him. He looked over my papers and told me not to worry, that the nose-ear-throat hospital would be the best place for my treatment as the weg has only affected my nose and they are the specialists. He also said they had chosen the meds well, and he thought the dosage and pred tapering was correct. He also answered all my questions about different spots I had etc (another side effect of pred). He told me my vision was due to pred, and it should improve once I'm taking much smaller doses. He also looked over my lab results and explained some of them to me and said they looked very good and only had one minor suggestion to include one test at some point. Since my CPR levels were very low he also figured that I should have no problem returning to work once my sick leave ends, and I should have more energy then.

Picked up my glasses today. It feels so strange to wear glasses, and looking around feels like I would be very drunk. Dunno why. Guess I need some practise with them

I guess I might have forgot to mention that I'm back on MTX. My doc had talked to a rheumy and another doc and they felt the vision issues were due to pred so they wanted me quickly back on MTX and lower my dosage. Cut down pred from 40mg -> 30 today.

[mishb]

It's always a wonderful feeling to see or speak to someone who actually knows what they are talking about.
I'm glad you got to see such a person today.

I'm glad you are back on the MTX and hopefully this rheumy was correct in saying that your vision should start to improve.

Great report, Wedgie

[Wegetarian]

Yeah, I should have booked an appointment earlier, I mean it was so relieving since I've only seen my doc once since I got out of the hospital in early Aug and was wondering about some spots on my skin ( just acne courtesy of pred) etc.

It was also nice to hear that he thought MTX was safe to use for extended periods, he said some of his rheumy patients have been on it for over 10 years and even though its a cytostat its still safe and even administered to children.