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Thread: Hello from Europe 2 :)

  1. #11
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    Yay, you did it

    Yay, for the avatar - however, I was waiting for it to be a little blue dot

    I agree, drz is a man of great wisdom........he is not Batman like Phil, but sorry Phil, he is more than Batman - drz is almighty man .......almighty with the sword/pen and almighty with the knowledge/wisdom.

    Good luck with the different nose challenges - I use the squeezy bottle and just a saline spray.

    I can't comment about the sleep thing - I never get to sleep before 1.00am and I am up again at 6.00am for work. However, I continually get up to have a drink of water throughout the night. The weekends are when I sleep the days away.
    I hope the sleeping gets better.

    Have a great day
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  2. #12
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    [QUOTE=mishb;72665
    I can't comment about the sleep thing - I never get to sleep before 1.00am and I am up again at 6.00am for work. However, I continually get up to have a drink of water throughout the night. The weekends are when I sleep the days away.
    I hope the sleeping gets better.

    Have a great day[/QUOTE]

    How do you function on five hours sleep? Do you nap during day?
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #13
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    Hi Wegetarian,
    cong for your new avatar. you look great
    and sure, drz allways adds here a lot of profound wisdom and extensive knowledge.
    thank you, drz, for sharing
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #14
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    Quote Originally Posted by Alysia View Post

    and sure, drz allways adds here a lot of profound wisdom and extensive knowledge.
    thank you, drz, for sharing
    Also, thanks drz for the brill birdwatching links which I enjoy so much !


    Fran

  5. #15
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    Quote Originally Posted by drz View Post
    How do you function on five hours sleep? Do you nap during day?
    No daytime napping I'm afraid - It's just something I am used too.

    When I get home from work I basically eat dinner and then do nothing ........well I read and comment on this forum and I do facebook.
    I get to bed by 12.30am. The later I go to bed the quicker I can drop off to sleep.
    I've tried going to bed early, say 10.00pm but my brain just doesn't stop talking

    On the weekends I get more than ten hours each day........and sometimes, not very often, I take a day off work for an extra sleep in.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  6. #16
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    Oh happy days! Talked with the doc this morning, I'm immediately allowed to cut down my pred from 60->40mg. Last I visited her in mid-august we discussed that we'd do that after a month - so I asked her about it and it turned out I could have done it at the start of Sept (I started taking pred at the hospital at the end of July). Just turns out no-one told me to cut down the pred . Oh well, glad I asked... My blood was fine, those white cells were down which I understood was a good thing, they weren't down so much that I'd get sick easier but were just lowered to a better level.

    I talked with another Weg patient at another support group and she was recommended to take a flu shot (we get it for free since we are at risk) and a shot called Prevenar against pneumonia (note its not against PCP pneumonia). Prevnar should be quite expensive though, 80 euro or something but guess I'll take it if its recommended. My doc said she'd get back to me about those as she'd check with the infectious diseases doc (or whatever its called in English).

    Turns out I could go swimming, but once I'm in a better physical shape as I'm still quite weak. That's excellent news, since I wasn't sure how long I'd be forbidden to do any fun stuff. Especially if I get to go to the spa for two weeks next month it would be a bit annoying to not go near the pool. But more about that later, should hear about it in a few days.

    The doc also asked if I've heard anything from the shrink, and when I said no she must have done something about it because they called me today. So I have an appointment in a week and a half. I'm feeling much better mentally though, still get agitated easier but I doubt anyone else than my spouse notices since I'm quite easy going anyway. Maybe cutting down the pred will help with that too, at least the mood swings and hyperactive feeling got a lot better last time I cut down the dosage from 80mg. I haven't been sleeping well, usually wake up about three hours after I've gone to bed and then stay awake for a few hours (and eat a big snack). So hopefully somehting might be done about that too. Although I don't really want to take any sleeping pills. I've been taking those melatonin pills earlier, but there were some discussion about that they might not be suitable for rheumies. My doc told me it should be fine to take them as they haven't any side effects listed with the meds I'm taking now. Dunno, guess I'll take them when needed since a good nights sleep is just so important when tired.

    Lastly I got a call from my company's insurance company. They had been sceptical about my bills since there were some problems with my papers, i.e. they weren't sent in time or someting. Turns out they were cool and said they will pay the invoices I sent them (about 300-500 euro's in hospital and med charges depending on what they cover) and they also told me that they'd prefer if I'd switch my treatments to our private doctor and they would cover the expenses and meds. I almost fell of my chair - I was completely expecting them to just deny everything and then me having to try to get their decissions overturned and the last thing I'd need right now is an argument with an insurance company since I've been told to avoid stress. Just was so surprised how super nice she was. I mean she told me that if I don't switch treatments to the private clinic, then I should re-new the prescriptions there so I'd get the money through them - and if my doctor absolutely refuses to have me switched over to the private clinic they could likely do an exception for me and cover the meds even though it wasn't prescribed by a doc appointed to me. Lastly they said it should be possible to get a doctor outside our clinic to treat me, if there isn't any suitable doc available - but in that case I need to contact them to work it out beforehand. Amazing... Really didn't expect that kind of service. Already asked around if they know any good doctors specializing in Vasculites and I'll try to get a time for our company doc to see what he thinks and suggests, although I'd rather have the names of a few great docs in advance in case I can pick I really doubt the public hospital would mind if I switched, the staff seem so overworked there.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  7. #17
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    Nice to hear some good news....
    Phil Berggren, dx 2003

  8. #18
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    WOW!!! You did get lots of good news!
    Mary
    dx'd Janaury 2013
    involvement: lungs, kidney and sinus

  9. #19
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    What a nice day yesterday. Wen't to my father-in-law's cabin for his and his wife's birthday party. It was 1.5 hours drive away so we were a bit worried if the trip might be too much for me. At times like that its really annoying that my spouse doesn't have a drivers license. I mean I could take a small nap on both ways so it would be no issue then. We were planning on leaving early (but I know that never happens).

    The weather was perfect, just like summer. The kids really enjoyed being on the beach.

    I'm a big fan of cigars, but haven't smoked one since May as I was told not to use nicotine after my surgery. Then my doc told me not to smoke anything or use nicotine due to Weg - so let's not tell anyone! Not my favorite cigar, I have some nicer ones in my humidor but wasn't even sure if I had time to smoke one or how I'd feel about it so didn't want to waste a perfect cigar. Well, it tasted great anyway Very relaxing day in the archipelago.




    I had a really nice chat with my father-in-law who is a retired doctor and very knowledgeable about our public health care as he has worked there for his entire life I guess, and in a quite high position. He gave me some good advice about getting the best care I can, and wasn't really sure if I should switch my treatment to the private sector. I'm gonna take his advice. I mean many persons have recommended me one doc in particular who has a private practise. Its fairly pricey, I guess about €100 for a visit. I'm going to do my best to see if I could get it into my insurance, but its unlikely since he works at a different clinic. If not then I need to think whether or not I should even try to switch to the private sector. I think I'll need to discuss it a bit more with the insurance company too. I mean if I can keep my treatment at the public health care, but when needed take appointments from our private clinic it could also work well - so that I could get quick appointments to specialists when needed.

    Too bad they also had one of my favorite cognagcs for dessert, but I didn't want to drink anything as I get tired enough without alcohol. Took two short rests and felt fine, but was quite tired in the evening when we left after 8pm.

    One thing I've noticed is that my eyesight seems to get worse in the evenings. When watching TV I have difficulties in seeing small text. I thought I might have put some settings wrong on the TV, but double checked them and everything was correct. I haven't noticed any issues during day time - just in the evenings. Its worrying me as I've always had really good eyes.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  10. #20
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    Wow, that looks beautiful - I'm not sure about the cigar in the picture

    I was first with a private ENT and then he referred me to the Public hospital because they are better equipment and have all specialties/specialists, readily available.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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