Hello from Europe 2 :)

[annekat]

Sorry about all these ups and downs, Dan. I'm sure that a week or so in the hospital was the last place you thought you'd be this summer. I hope you are right that you'll get home tomorrow and be able to enjoy the rest of your sick leave, as much as possible, anyway.

[Wegetarian]

Yeah... that's for sure. I mean I was so happy in the spring, I ate healthier and excercised regularly and felt I was starting to get to a better shape than I was before I got DX'd - although I did get fatigue quicker if I went say swimming. Was trying to taper down to 2,5 and was so excited that when I get there I'd be eating less pred a month than I did per day last Aug. Also figured I'd soon have some days per week with no medine to take.

But dunno, stuff happens. I sounds like I need to take a long sick leave which is a bummer for sure. They just took me for a sonogram on the kidney and it was fine now, so I should be able to leave tomorrow.

My roomie left, so I have this large hospital room all for myself and I'm gonna continue watching Star Wars from my laptop. Also found out they have free soda here if you know who to ask Everyone is really friendly so I just need to lie in bed, watch movies and eat some treats that me friend brought me on Monday. I dunno fi I can say this, but I'm really enjoying myself and I already asked if the nurses would mind not waking me up at night or morning so I'd get a good nights sleep. Mmm...

[gilders]

Hope you're having a good day (well as good as possible). Let us know how your results go re: kidney biopsy.

Enjoy Star Wars and relaxing. Just remember to go for short walks occasionally, you don't want to end up getting blood clots.

[Wegetarian]

Thanks, they released me already and I just came home.

Really bloated, went up about 8 kg in just 5 days. Its especially rough on the knees, and my underwear would make sores on my thighs. It seems to be going away though, since I lost over a kilo since yesterday. Quite exhausted too, guess the pred is running out.

The staff was super sweet and professional. I got this really elaborate list of which meds to take and when, where to call if something happens, times for appointments and labs. Last year they left me with no info, so its quite a change. Just feel like I got the best possible care they could have given.

Had some fun too, I bought 10 boxes of chocolates. They were fairly small, but looked nice enough that I could give them as gifts. Went to the hospital reception and sent one to my uncle who works here and offered some support and had taken me for coffee, then I asked to send one to the IT-department. The receiptionist was a bit surprised and were thinking that they don't really have an address to the Help Desk but they'd be happy to take it there. I told them the Internet connection had been fantastic and made my stay so much nicer. They were sure the Help Desk people will really appreciate it since they couldn't remember that no one had ever sent them anything before.

Then I took one box to the kitchen / cleaning crew. The lady was really surprised and asked if I really wanted to give it to them who are on basic duty. I said I appreciate they took good care of us, and she was almost in tears.

Then I took one box to the doctors office.

Then I went to the nurses coffee room, I said I only gave the doctors one box - but I'll give the nurses two boxes as they are the ones who do all the work anyway

[LisaT]

Omg you are their dream patient for sure! I bet it helped in your healing process to make so many people feel recognized and appreciated for their work. Hope you continue to feel better.

[gilders]

"Quite exhausted too, guess the pred is running out"

Probably not the pred running out - It was your chocolate deliveries that wore you out

[Alysia]

I am glad that you are home and getting better

you makes me feel craving for chocolate
please continue to update....

[annekat]

Me, too, Dan... so glad you are home and that you had such great care in the hospital. I hope things will continue to improve and will stay that way.

[Wegetarian]

It was your chocolate deliveries that wore you out

Yup And the pred tells me now that I should have eaten all the boxes myself

My weight stopped going down, but I don't feel as bloated. I think I know exactly what causes it too. I blame the second night snack! When I go to bed at around 11pm I try to eat something light, like fruit - but when I wake up at 3am I'm craving for something a lot more filling.

Anyways, I feel quite good. The Pred makes me have constant mood swings and I can't even watch an action movies without tears in my eyes. My spouse tells me its like I was with those hormones you have when being pregnant.. Oh gosh, I hope I'm not pregnant!

I'm surprised the pred hasn't affected my mind more than it does. I mean last year I think I was a worse mess when eating 80mg. I did get really annoyed though when I realized that the pred they had me take was different from the one I had last year. I.e. I had an unopened box of 40mg tabs of Prednisolon, but when I was going to put my meds in my pillbox after coming home from the hospital I noticed the prescription said Prednison. I can't really remember how they differ, something about metabolizing differently maybe? Anyway, I callled the hospital and they said I need to get the right stuff so off the pharmacy I had to go the first thing in the morning. Being real stingy it of course annoyed me that I would have had a full box of 40's and 20's in my cupboard but now they will go to waste.

I get agitated much easier too, not much of a problem as I'm quite easy-going. But at nights when the kids throw tantrums it gets quite difficult to keep cool, which saddens me as I would like to spend more time with them but don't really have the energy.

I miss my hobby so much... I guess that's the worst part really. I never really got back after getting ill the first time, but did feel fairly confident in the Spring that I was going to be able to return. Once I got the Pred to around 10mg/day I think it didn't really affect my focus all that much, even though I couldn't remain focused for 6+ hours straight as I used to before I got sick. Now with the pred at 80 I realize that its going to be a very long time before I have any chance of being where I left off when I got sick the first time.

On the bright side I've never really thought it was so healthy to spend all my weekends glued to my computer, so for health reasons another hobby would probably be much better. I don't think I can focus on reading books yet, but I've watched a lot of movies and I hope to start exercising a lot once I'm not in such a poor shape. Right now I felt exhausted after a 10 minute walk outside, but I'll start slowly. I'm not allowed to go to the gym or swimming for a while, so I think it will be light walks and maybe some gymnastics at home for now.

Another thing I was thinking about was to try to help out some other people. Since I have ample time and still feel quite OK I asked if I could get some old laptops from my employer. I know we have some that aren't used, as they aren't efficient enough for high priced consultants. However I did notice in our local support groups that there seem to be quite a lot of people who have their finances tight, so perhaps they could use a laptop for surfing the web and and writing documents etc. Dunno how that will turn out, but if I get a couple from my company and if its not too difficult to erase all the confidential stuff and perhaps re-install the operating system then maybe it could turn out into something.

I'm also thinking about joining some online courses, to improve my skills. There is a course I've been wanting to take for 6 months, but with a fulltime job, kids and a hobby that consumed all free time it really wasn't practical.

[Wegetarian]

Well now I'm getting a bit annoyed.. Since I left the hospital last Thu I've been quite OK. I mean I still feel a bit bloated and with the 80mg of Pred I get around 3-6 hours of sleep. Its not so bad in the mornings as after a double-espresso and the Pred I'm all hyper-active untill the early afternoon, but then I get quite exhausted. On the few days I've only slept 3 hours I do feel awful - but if I get 6 then I don't really have any complaints.

So anyway, I noticed my eyesight started getting worse. I guess this already happened in the hospital as they said they will get me an appointment with the ophthalmologist but couldn't get me booked before September. But now it was a bit more rapid, and I also had some blood in my eye-whites two times. So I figured I'd ask my doc if its urgent, and I also booked an appointment with an optician (at the local mall you get the eye-check and a pair of glasses for 29 euros, so figured if they'd notice anything really out of whack I could then go to the doc sooner). Well my doc told me to call the eye-clinic. I asked the nurse there if I could get the appointment for the doc I saw earlier, since he seemed to be the only ophthalmologist I've met who knew about vasculites. She was real nice and actually called the doc in question, and then she informed me that the doc suggested I come to the waiting room tomorrow at noon when they open.

Such a bummer as I was going to have the whole appartment for myself tomorrow (parents said they'd take the kdis for the day and my spouse is going on a work trip). A friend that I haven't seen in half a year would have came over too, so it would have been a fun day. Instead I'll spend the day at a hospitals waiting room. My son also has a fever now, turns out 5 kids called in sick from his class so I bet its quite contagious.

Oh well, I bought myself a pint of Ben and Jerrys, some candy and soda. I've tried to avoid the stuff and eat healthier, but figured today I have to treat myself to something extra as I was so looking forward to relaxing tomorrow with a friend.