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傑 ‧ 3歲

content discovered on Friday, August 04, 2017

會依上下樓按電梯、會刷卡搭地鐵、會剝葡萄、會夾襪子、認識水蜜桃、會遵守搭機規定、熱愛排雪花片... 這個月7/8-7/21在日本旅行,旅行過程中傑學會了許多日常生活的能力... 會依上下樓按電梯,因為家裡沒電梯,平常傑搭電梯的機會並不多,旅行時反而經常使用電梯,經過練習後,傑知道up是往上,down是往下,也能分辨上下樓的箭頭符別,進到電梯後,開門和關門的符號,傑也能正確判斷,所以旅行時搭電梯大多是傑來操作按鈕。 會刷卡搭地鐵,旅行時每天都要搭地鐵,進出匣門的工作也是傑負責的,傑能夠順暢地將地鐵票放入匣門票口再取回,因為每天練習多次,傑已經知道如何進出地鐵了。 會剝葡萄,傑在台灣很少吃葡萄,所以也沒機會剝,出國後買葡萄來吃,傑表示要自己剝自己吃,即使動作不快,仍堅持只吃自己剝的葡萄,也增進了練習剝葡萄的機會。 會夾襪子,上個月傑每天會要求幫Grandma晾衣服,但是在使用夾子的能力才還沒有很精熟,經掌很努力地把夾子打開後卻對不到要夾的衣物,因為力氣撐不開夾子而放棄,這個月傑的力氣已經能穩定撐開夾子,手眼協調也能對應到衣服,所以拿夾子夾襪子,再晾起來已為讓傑很有成就感的事情了。 ... read more »

Gone and back

content discovered on Wednesday, August 02, 2017

So I did the urine collecting a week later.When I collected the containers I expected one with a liquid or powder and one without. But they were both without.The first day went OK, the second day my kidneys almost shut down, and as I didn't know if I could take a tablet to keep them going I took nothing. Maybe they can find the reason of the shutting down..Had to pee in a little pot too. Pity...just a few drops. I was afraid they would tell me in the hospital it was not enough, but the nurse didn't even ... read more »

My Blogging Dilemma

content discovered on Tuesday, August 01, 2017

Hi everyone! I have a little bit of a dilemma in terms of my blog and I would really appreciate any advice or opinions you guys can offer. After all, youre all so wise and learned (see how Im buttering you up, eh? *hands you plate of chocolate chip cookies*). I began this blog four Continue reading My Blogging Dilemma read more »

Passchendaele 2017

content discovered on Monday, July 31, 2017

When you died by the need to kill and disappeared for forever in the mud of war when you died a father, a partner, a son, a brother, and a dear friend, you were just gone and none even knew at the moment The hell created by others because the lives of you all are just part of a game of ego and false power took all you stood for and more And there you are a name on a wall, no grave but you left us far more You left us our future our new generations You gave us peace. © Syl Ple... read more »

So I try

content discovered on Saturday, July 29, 2017

Today I started to feel better.I'm sure it was due to all the well wishes ( ;)).My head was not as clouded and my muscles could deal with movement longer and with less pain and tiredness.I think the shock of being at stage 4 already and the realization that I have to choose for dialysis or refusing dialysis, and that it all means that when things won't improve I'm going to die sooner than later is fading.Refusing treatment is not an option.Dialysis at home is not an option. Not enough room for the machin... read more »

Admin problems -2-

content discovered on Saturday, July 29, 2017

The appointment for the heart echo arrived.It's scheduled at the same day as the visit to the cardiologist. So there won't be a written report available during the consultation.The health insurance was also present in the mailbox. It was agreed I would pay on their site, but I had to contact them again because there was no payment link.So I got the bill in the regular mail.Those people are very very sick!!!Well, at least I can pay and maybe then all issues will be finally solved. After precisely 6 months... read more »

...and I played calm.

content discovered on Saturday, July 29, 2017

People don't like to read blogs about depression, illness and pain, unless they suffer from the same.I know that, but I still write about my days, because I think it's important to give an insight what goes on, so people are able to help and support someone to feel better, or live through it too, knowing they're not alone.No news on the subject of the financial administration. I bugged the organisation that collects the rent to confirm receiving my mail, first by using the regular email account and then ... read more »

Entering the world of nephrology.

content discovered on Sunday, July 23, 2017

When you smile...there's something good in it, isn't it? I feel like I'm on a sliding slope.When I was in hospital waiting for the morning or death, I didn't feel like this at all.I had the feeling all was about attitude and inner peace. I got that. Didn't feel dependent on anything. Just being in the hands of life, of nature, and with the request to the nurses to place my bed under the trees and stars outside so I could die there, I was at rest.If I hadn't survived it would have been OK too.Now I feel ... read more »

Mistake in referral, and decision.

content discovered on Saturday, July 22, 2017

So I got the paperwork from hospital.In a hurry I have to collect urine during two days.Need to go to hospital to collect the containers,collect two days,bring them back, and get bloodwork done.When I make a mistake, like forgetting to collect, I have to start collecting again. So I have to go to hospital to fetch a new container.And then I have to sit for 30 minutes in a position I rarely take for longer than a minute, in a silent room, without reading or whatever, alone, and the blood pressure is taken... read more »

Time to call the hospital twice.

content discovered on Thursday, July 20, 2017

It took 31 minutes to 1. phone cardiology. I got an appointment, but only with the cardiologist, not for the echo.So either they had forgotten the echo, or the appointment was made as a reaction to the kidney tests. I wanted to know what was going on.It took quite a while waiting, but then the secretary had a peek in my files and said they'd forgotten to make an appointment for an echo. It was the 6-month appointment, not a reaction on the kidney problems. (Caused by heart-medication).The person who mak... read more »

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