User Tag List

Likes Likes:  5
Page 21 of 21 FirstFirst ... 11192021
Results 201 to 209 of 209

Thread: Hello from Europe 2 :)

  1. #201
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    This is certainly great news.
    I love the idea of the spa thing. I'm glad you are going again.

    My doc also has me on bp tablets to protect my kidneys. Since we are in different parts of the world, I guess this must be a common practice.

    Thanks for keeping us updated
    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. #202
    Join Date
    Aug 2013
    Location
    A pale blue dot.
    Posts
    499
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Been meaning to come by for so long... So much has happened. I guess I could give you guys a brief recap.

    So my relationship with the mother of my children hadn't been all that good for a long time. I think my health issues was kind of the last drop. I think I mentioned before how I felt she turned her back on me when I got wegs. I mean just a little bit before that I had brain surgery, which was a very stressful time for our entire family - and when I got past that she was so relieved and felt it took all her energy but was happy to think that all was then well.. Well ofc it wasn't as I was immediately diagnosed with Wegs and had another long sick-leave and was in a quite bad shape as I was still weak from the surgery. I think we became more like roommates then and started to drift apart. In the fall of 2015 she wouldn't really want to spend time with me, and I couldn't get her to go out on dates with me anymore even if I'd get a baby-sitter for us. In March 2016 she stopped talking to me, and walked around the house with earbuds on, and behaved quite badly towards me. I told her that if that won't change then we will have to break up. I knew she hadn't been happy with the relationship for a long time, but I tried to get her to go to counseling with me for a few years, but she always refused. Well, she decided that we should rather break up in the coming July, as our children would have their summer break from school and we'd have our holidays so it would be a lot easier from a practical perspective.

    The weird thing is that while I felt fairly content in the relationship, like yeah - I wasn't happy and the romance was gone. Still a few weeks after the break-up I realized how bad the relationship was, and how much better I felt being alone, even though I didn't really like my new apartment that much and felt quite lonely. Like I used to have a lot of friends, but then with the spouse and kids I always felt I had so much to do and so many people around me that I didn't really miss seeing my friends that much. Not to mention that it was quite a hassle to meet them as they had families of their own, so seeing them a few times a year felt enough. I was also unemployed from the fall of 2014, so had a bunch of time on my hands. I guess I mentioned it before, but I got a fairly nice pocket money from playing online poker. So financially I was OK'ish. Unfortunately my passion for poker was gone, and also the mental stress of the break-up made it hard for me to focus.

    Fast-forward a few months, and I met a really nice woman. Things moved a long really fast. I had my childern at my place a few days per week, and every second weekend. Since I was going to have the childern for two weekends in a row (we swiched so my ex could have a B-day party without the children) I suggested to the girl I met that we could go on a short trip somewhere, if she didn't think it was too sudden. All my life I wanted to travel with a girlfriend, but never really done that - as my ex always had a reason why she couldn't go. So she said that would be great. I was thinking about just a weekend trip to some nearby country - but she suggested we could go to the Canaries for a week. I thought that would be really awesome. We looked at some trips, and she noticed that you could get a last minute trip to Thailand for almost the same price. I was immediately sold on that idea too, as I've never been to Asia. So we bought a trip even though we just known each other for two weeks. Was a real awesome trip, easily the best one in my life - even though I got a nasty flu at the end of it. We did also go to the Canaries, but that was in Feb this year

    So anyway, I was real happy. Had a nice girlfriend who gets along fantastic with my kids and has a good heart. I had been looking for jobs, but wanted to find something that I'd really like. The long gap in my CV didn't really help. Anyway, I found one that seemed good - and managed to get it. Started working last month. The work seems nice, and its in a perfect location. Like if I have the kids, then I can drop them to school on my way to work, and its less than a 20 min drive from my home and they have plenty of parking.

    Now the downside... Remember that flu I got in Thailand? It continued for a while when I got home, and at the end of it I noticed I was coughing some blood. Obv I went to the health care center, and they took some x-rays and said its nothing to worry about and should end soon. After a few weeks I called my doc, and they took new pictures. In February they still weren't sure if it was anything - as it seemed those original changes were smaller, but something new had came. Just to be sure they upped my medication a bit, and ordered new x-rays for April to see if it would help. Now last Monday I got a fever, thought it was the flu. Had my doctors appointment for Tuesday so it was quite convenient. The doc said the knew x-rays showed more changes and that I was still coughing some blood wasn't good, but the nefrologists didn't know how to interpret those so they would send me to the lung department ASAP. They would have wanted to give me some pred, but figured it might make it harder to take new x-rays. She also called them after sending the info so that they'd take me at the earliest possible time. She said that if the fever didn't go down I should go to my workplace doc in a few days to make sure it isn't pneumonia, and if it continues to Monday then get back in touch with them.

    On Wednesday I was feeling a bit better, although sometimes really fatigued - but was thinking I might do a short day at the office on Thu as I no longer had a fever. But then late on Wed evening I started coughing up a lot of blood, and especially so in the morning. I immediately called my doc (they have a time from 9-10 in the mornings when I can call the nurses). And discussed I need to get in touch with the lung department, and that they'll call me back in case I can't get through. Was told I needed to come to the ER. They took a bunch of tests and took me into the hospital. They wanted to give me the 1g of pred in my veins, and said its preferred to give it in the mornings, but in my case they think it would be good to start it right away (was about 22:30). Could really have used a good nights sleep, but of course I agreed.

    This morning the doc came for a visit, and said that the X-rays and tomography (how should I spell that?) scans showed stuff that would correlate with wegs and the bleeding, so they want to give me 3x the large pred doses, then orally and on Monday they want to start with cyclo-infusions. They said it would be fine, as my cumulative dose is still quite small. They also said I'll need at least one months sick leave.

    Really sucks... This weekend was also my weekend with the kids. My mom dropped me off to the hospital and the children were with us, but didn't really know what to say as I didn't know what would happen either. Anyway, my mom and my girlfriend promised they'd help taking care of the children (their mother is on a trip for the weekend).

    But yeah... not at all happy that again I've got everything sorted out nicely, and then the rug is swept under my feet. Before this I think I was in the best shape of my life. Like before wegs I weighted around 102kg, but it didn't really bother me even though its borderline obese. When I got sick I went up 15kg, dropped it off before the relapse. After the relapse I started paying attention to what I eat, and exercise regularly and got my weight down to 82 kg, so 35 kg less than what it was at most (77lb for you yanks). My goal was to start lifting weights regularly (been a bit lazy with that) as I was happy with my weight, but the pred and the weight-loss had also made my muscles smaller.

    What a long post... Prednisone does make me very chatty
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  3. #203
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks for the update, Wegetarian! It was interesting reading. Sorry Wegs had to rear its head again, but I imagine you'll pull through it. Nice to know about the new girlfriend.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  4. #204
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome back, Dan. I love reading your thread, some great posts from the good old days with my sweet Batman. I am also allways grateful to you for your kindness to him on his last weeks on earth.
    Thank you for the update. I am glad for your new girlfriend and job.
    Sorry about the wg flare. Have you being on any maintenance meds while it started ?
    Sending prayers for fast recovery and back to remission.
    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.

  5. #205
    Join Date
    Aug 2013
    Location
    A pale blue dot.
    Posts
    499
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks

    Yeah, third times the charm... So this is like routine now anyway Besides, I was probably in the best shape of my life before I got this new flare - so hopefully I will be in a bit of a better condition when I get through the worst of it - and could continue working soon. Was told I'd need at least 1 month sick leave, but they want to have me on 80mg of pred when the 1g impulses are done, so I take it it will take over a month to get to amounts where I can think properly.

    Now at home for a few more hours. My son has had quite a temper the entire morning, and the pred causes me to loose my temper real quick - so unfortunately not all that relaxing.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  6. #206
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Great update Dan,

    A lovely lady, some fantastic holidays and a new job. Just sucks that the WG dog is not co-operating as he should.

    Can you take one months leave from your new job? I hope so.
    Hopefully all of the med increases will get things back under control for you
    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

  7. #207
    Join Date
    Aug 2013
    Location
    A pale blue dot.
    Posts
    499
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hey mishb,

    yeah - no problem with the sick leave. Was a bit worried though, as I was just doing some training for the new job - and hadn't started working in a project yet when I had to tell them I'll be away for a month. Although I haven't worked in a project there I've got a ton of good feedback, since I helped out with some things whenever I found something I could be of use in.

    Feeling real good, the only thing I notice are the side effects of Pred - which I guess everyone here knows by now. I.e. hard to sleep and difficulties in focusing. Real happy that they allowed me to go down quick on the dosages. When I got out of the hospital I was on 80mg, then after a week 60 and after a week to 40 (which is now) and this Thu I should be able to cut down to 30mg and after two weeks 20mg. But I'll see the doc today so might get more up to date info. My sickleave ends in the beginning of June, which is slightly before I should be able to take 20mg. I'm a bit worried about being to work with 30, as the last time I kind of felt 20 was the limit where I could do something productive as I usually need to focus a lot when working, and even at 20mg I felt my short time memory was bad and could have some trouble concentrating. At 15 it was OK, and at 10mg I didn't notice anything...

    The weird thing is that I don't think the pred and wegs affect me nearly as much as during the last two times Wegs hit me. At first I was thinking it was because I was now is such a good shape when I got the relapse that it was easier on my body. But later I started thinking that before I always felt that I needed to go through these health issues alone, but now I have my girlfriend who has been very supportive (she even insisted to come and wait with me in the ER when I was there for hours). I think that is a big factor in why it feels it has gone so easily this time. Also, its a very nice feeling to be in love

    But yeah, everything seems to go smoothly health wise. I stopped coughing blood, so the meds seem to have done their thing. Still booked for one more cyclo-infusion, and probably will be scheduled for more of them. Work wise I'm a bit worried, even though I managed to get a permanent contract it has a 6 month time when they could fire me immediately without a reason. My boss told me to try to get well as good as I can, and not stress about work while I'm on sick leave (although I'm still gonna take some courses which will help me at work, and try to participate in some meetings remotely as I would really like to work). On the downside we had agreed on me taking 4 weeks of vacation for the summer, but she quite frankly said that it wouldn't be a good idea as I'm already gone for so long - and I would have a two week vacation a few days after my sick leave ends. She said it was OK though that I'd take one week, as I have a vacation booked where I'm taking the kids for a week to a spa, and my girlfriend will be joining for a few days too. Managed to get a subsidized vacation there, which should also be very fun as they have a lot of activities planned for the children.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  8. #208
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks for the update, Dan. I am glad you are recovering so well, and being greatly supported by your girlfriend.
    I wonder about the issue of high pred and focusing. I never had it. Maybe it was more emotional overload because of the situation that disturb your focus in the past ? Maybe this time it will not be an issue ? Sending prayers for the best.
    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.

  9. Likes Jaha liked this post
  10. #209
    Join Date
    Sep 2013
    Location
    England
    Posts
    829
    Post Thanks / Like
    Mentioned
    38 Post(s)
    Tagged
    0 Thread(s)

    Default

    Congratulations on your new job and girlfriend.
    Flares always seem to come at the worse times. But a good positive mental attitude can help with recovery. So as you seem to be happy with life going in the right direction now, maybe it is the best time for a flare (if there's such a thing). You've got a good life now which gives you an extra reason and boost to kick Wegener's butt!
    Diagnosed April 1995

  11. Likes Pete, Alysia, drz, Jaha liked this post
Page 21 of 21 FirstFirst ... 11192021

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •