e-flow and thriompf 5

Last week I had some appointments. First I had a meeting for our internetcafé. Our startplan was oke and now we can open the internetcafé finally. Also we got the subsidy we asked to the neighbourboard. Now we can start!
An old girlfriend came to visit me and she had just moved on her own again. She told me she had found a job for a one year contract. She was at home for two years and it became difficult to find a new job, but she has found it now.
On wednesday the new colistine, my inhalation antobiotics medicines, came. A new methode. One farmacy in the netherlands will deliver those medicines in the whole country. Friday I also got my new aerosol apparatus. The e-flow. It is very quiet and super fast...I'm glad with it.


Today I had to swim and it went very good. At 2 o'clock they came to messure my scootmobile. He showed me a showmodel and it was the triompf 5. A red one. If there is one in the depot, I get him next week but when he has to order a new one, I get it over three weeks. Hope we have some nice weather soon. It looks like fall...

Nice holiday

We are home again! We did so many that arjan became sick…what a pity!

Let’s start at the beginning. Monday morning we had to go to the town hall, to get my new passport and to bring some papers to get a scoot mobile. I had to make a copy of my new passport also for the scoot mobile. The papers were oke and it took only a few minutes. Then we went to the post office. I had to send back the sewing machine I ordered on the internet. It was not working good and the man from the sewing store said he couldn’t fix it. So I found out I had still guaranty. So I had to send back the machine and I get back the Porto costs. I get a new one or they make it…Well I have an new second hand machine so I rather would get my money back….Then We had to go to the vet, to get Macy’s diet food.

After lunch I slept a while on the sofa until the family was coming. Around 2 o’clock they were over here. We drove to IJhorst were hour little house was. Macy thought we had to drive for two hours, she was surprised we were there in 40 minutes. On the window at the house, there was a sticker, “no pats aloud!” oeps…arjans’ mum didn’t booked for the cat..
The oxygen was there, so I could stay!

The park was very quiet. It was a nice house. Three bedrooms, a big bathroom wit bath, a living room and a kitchen with dishwasher! In the barn there were the chairs for the garden. That day we discovered the park. We went cross country and got stuck in the woods with my wheelchair. We came at a camping ground but we think there will come new houses to rent. Tuesday we went to the Zoo in Emmen. It was very nice weather. Only a bit windy. Wednesday we went to the Lokkerij. That’s a place where storks have their nests and breed out their eggs. Thursday we went to Meppel to a fair. I bought some shoes. Friday we went home. We brought home Macy. Then we went to luttelgeest to the orchideenhoeve.
When we came home arjan went to bed. He was sick.
Saturday we went to the supermarket and watched tv. Most of the weekend we did nothing.

nice days and beautyfull weather, finally!

Thursday evening, after diner we drove to Tilburg. We left at 7 pm. The trip went good. Macy stayed on my lap very quietly. There wasn’t so many traffic as we thought it would. We arrived at 9 pm. Friday morning, I was awake very early. At 5 am. I couldn’t lay down anymore I had to do my aerosol therapy because I had breathing spasm. I slept on the sofa until my mum or dad came downstairs.
In the afternoon we went to Chaam, to the family Versteeg. We sat at their little home at a camping ground. It was very nice and cosy. We went for a walk over the camping. I couldn’t walk so I used the wheelchair. I didn’t bring it for nothing because I knew I had to use it.
When we came home at my parents’, we had a barbeque. Mum made her sate, the Indonesian way…jammy! We sat in the garden the whole evening, for the first time this year. Finally.

Saturday, we went to the mall in the Reeshof. I needed some shoes and my mum also. But I couldn’t find the right ones. Then we went to Breda to my aunt. Her backyard was ready. She had a nice terras with wooden chairs and an arbour. It was very beautiful. Mum, aunt joyce and I went to the market to get some fruit and vegetables. I sat in my wheelchair. The men’ watched formula 1.
After diner at home, Arjan brought us to the theatre. Mum and I went to see Jesus Christ superstar, rock opera. I had some tickets at the second balcony but I couldn’t get up the stairs so I got two tickets in the auditorium. Problem solved. It was very good. The lyrics were in dutch but we knew the music. Very good singers. At 10.30 pm it ended and arjan send me a sms that he was waiting at front of the theatre. What a service…

Sunday we went to Baarle Nassau. I bought shoes and slippers! Nice!
Mum didn’t find shoes and dad got a jeans. We ate Belgian baked potatoes. At home I slept on the sofa and the others watched formula 1. While ajax-psv had their soccer final, we had diner and after the match we went to Heerenveen again. We were home at 10 pm.

Monday my house keeper came again and meanwhile I walked to the dentist two blocks from here, I could walk again… When I came back, in 20 minutes, my physical therapist came, and I worked on t he home trainer. It went oke also.
Tuesday I went to the pharmacy and I bought some little things. After diner we went to my cousin. It was his birthday.

Wednesday I went to the hospital, UMC-Groningen for my cf check up. I thought I needed an antibiotics because of that breathing spasm. I have for a couple off weeks. But there is no sign of an infection in my lungs. Well, it’s true, It doesn’t feel like it, but why do I have breating spasm? Well, it can be the blood sugars. They are higher lately. I have to go to the diabetes nurse to learn about an insulin pump. Maybe that’s it. Now I have to take 6 times a day insulin, more then before…iehh

Thursday I supposed to go to my swimming but I had an conference for the astma foundation in Haren. UMC-Groningen revalidation. Beatrixoord. We spoke about fellow-sufferer contacts. And how we can combine it with therapy. It was a very interesting afternoon.

Friday I had to wait for my oxygen and it came at 11.30 am, so it was early. At 4 pm I went to the swim group and I trained in the water with a physical therapist. It was oke. I was home at 6 pm. Arjan came home shortly after me. We made diner and watched tv.

Saturday we went to the supermarket and to the market in the village. Then we sat in our garden and we watched the qualification of the formula 1. At 6 pm we made diner and then we went to thialf to see the taptoe with a couple of marching bands. Very nice! Marching band van Renssen exists 50 years now and a lot of my friends from my yought were in de band. I went to see them al the time but I couldn't get in it because of my cf. We were home at 12 am. It was raining al little bit.

Today we have to clean the house and do the laundry. Tomorrow we go on a little trip until Friday. Arjans’ parents, his sister and her boyfriend are coming to. It is a house for 6 persons. Macy is also going. Hope she will like it…

Good week!

My little pony's

Last week I had trouble with breathing. More than normally. I don’t know why. I don’t feel if I have a pneumonia. I was tired after the swim Thursday and Friday. When I came home I couldn’t do anything. Arjan went to the grocery store by himself. Saturday at queens day, I didn’t do much. Sunday we baked an bread in the machine. It smells so good when you wake up!!
Monday my housekeeper came again and I had to train on the home trainer with my physical therapist. It went oke.
Tuesday I went to the sewing machine store to buy a second handed machine. My machine is broken so I wanted an other machine. But a new one is very expensive. So I bought a second-hand machine. I parked my car to far so I could get it later this week. I had to go to the internetcafe meeting in the afternoon. So when I came home at 4 I needed an little sleep on the cough.
Today I went to the post office to change dollars into euros. To buy the sewing machine. I also had to go to the town hall, to order a new passport. Now a day it takes a week to get a new one…so next Wednesday I need to get it. I also got some papers to try to get a scoot mobile. Little walks are difficult for me now too… Then I got my sewing machine.

I made a “crochet” little pony. One for me and one for my niece. I have now stiff fingers!!
But It is nice to do when you can’t do much.



Arjan is to the soccer game form Heerenveen against twente to get to the UEFA cup. I hope they will win….I think so they do…
I’m going to watch tv, drink some tea and do my aerosol therapy…

the flowers outside

Today the weather is al little bit better, but still less sunshine I prefer to sit in the garden. I made some pictures of the flowers we bought last Easter. The pots at the front door are cosy with the chairs and table. Even the flowers at the fence and the clematis at the wall in the garden are looking good.


Macy wanted to see what’s happening in the garden, so she hangs herself at the window of the backdoor. My azalea needs a water bad, so I put it in the kitchen sink. It has so many flowers, wow!.


I figured out why I’m so tired al the time, why I’m so thirsty and why I have to go to the bathroom so often…My blood sugars are to high. Monday night I made a curve when I had my enteral feeding. It was to high. Monday I called my doctor and I have to take 4 shots of actrapide insuline before I use the enteral feeding at night. Also my schedule of novorapid changed.
Bloodsugars-->shots novorapide
4-6 -->2
6-8 -->4
8-11 -->6
11-14 -->8
>14 -->10
>20 -->12

Last night I used 4 shots of actrapide but the sugars were 15 between 3 and 6 hours. My body must used to it, and takes some time…Tonight again…

Tonight Our Soccer club Heerenveen has to play the final against Roda. When they win the play the final to get to the UEFA CUP. We hope they get there!

Tomorrow I go to the golf course to plan our new lessons and then at 10 o’clock I have to be in de swimming pool in Wolvega. Friday my housekeeper is coming and my oxygen supplier comes to bring me new oxygen. Then at 16 o”clock I go to swim in heerenveen with the asthma foundation. I’m looking forward to it.

Long time, no see

I didn't write here for so long, but I didn't come to it. On my dutch site, I do not write everyday anymore otherwise it is always the same. But this is too long...November...man...that's a half year ago..Shame..

We had very good time with christmas, and new year. We didn't do very much because I didn't want to get sick or have the flu, because that can be fatal. The weather is not good. It's becomming now al little spring. It is just cold, no sunshine. Even with easter we had to wear a winterjacket to stay outsite. We made our flowerpots nice, so it looks like spring. Today it's raining al littlebit. The forecast says it's getting sunny in the weekend. I like it...

Last month I went to the hospital for my checkup at the transplantationdoctor. I'm now 6 on the waitinglist. In groningen they did now 8 transplantations and in utrecht 9. So if they get trough with transplantations, I can be this year one of them. Over two weeks we go to my parents. I'm going with my mum to the theater in tilburg. We are goinig to the musical: jezus christ superstar. Then from 15-19 mei we go the landal green parck with arjans parents and sister. So that's our vacation this year. We hope we have a nice, warm summer, so we can sit in the garden al lot. This week i'm not so good. I'm tiered and i have breading spasm the last couple off days. So i didn't go to my swimming lesson. I'm having a day off. quiet at home.