Inner beauty is visible on the outside

With this phrase a workshop was organized by the social workers of the rehabilitation centre I attend. Most people find it difficult to accept their selves after they became handicapped. Scars and disability make them feel ugly and rejected.

That's why it's important to accent those things you find atractive in yourself. When you accept your self how you are, you will make that visible on the outside. People will react different to you when you are happy the way you are.

This afternoon was all about how to put accent on the things you like about yourself. People where invited to step in front of a mirror and tell the positive things they liked about themself. Dyanne Beekman, a famous stylist in Holland, gave advice how to dress and to emphasize things that are goodlooking. With simple things like a scarf or a piece of jewelry you can accent for example your eyes.

Infusion pump

It looks like all the insurance companies in the world have decided to bug their clients. I read on Lissie's blog that she had to change staff and look for another hematologist, and Dougs company is just very nasty not give him the things he needs for his Chelation therapy.

My insurance company is busy to check all the infusion pumps people have. Earlier this year I got a letter from a company Klinerva, never heard of it, so I looked it up at the Internet. Hmm, they have pumps I don't want to use. Time to think of strategy to keep my Crono 30.




Two years ago it was time to ask for a new pump, I had my Terumo pump for over 5 years and it gave a lot of trouble. It occluded many times, and I can say that's it not funny to weak up several times in the middle of the night to check the pump. When I slept over at my friends house, she had to wake me cause I slept through the alarm. Finally waked, I had to look why it alarmed and have to correct it with a sleepy head. :(
I finally was so fed up with it, that I toke a look at the Internet to see if there where new pumps.

I stumbled up on the Crono 30, and I felt right in love with it. It's a tiny pump that you can put in your pocket. The smart thing is, that the syringe has a piston you can take off when you filled it. you simply put screw the syringe on the pump. The pump is especially designed for Desferal. The fluid is sticky, and that causes the obstruction. The power of this pump is much stronger and pumps through the occlusion.

I send a mail to Cane Italy, and a company in Holland contacted me. I was the first person in Holland how may use this pump. The company put a lot of effort in it for me to get the pump. They convinced my insurance company that this was the right pump for Chelation therapy. They agreed, and that's how I got the Crono. You can imagine that I don't want another pump.

Last Tuesday a lady from Klinerva came to see the pump and to compare it with their pumps. She tried to convince me of their pumps, but I had good argumentation to stick by my Crono. The pumps they have look pretty alike to my old Graseby and Terumo pumps, except the color.They are exactly the same size as my old pumps. I am not sure that they don't give the same problems as my pumps did. They are large, and when I am in my wheelchair, the pump gets in the way.

The lady agreed that I had some good points in my arguments for my pump, and she will discuss the possibility of keeping the Crono with the insurance company.


So I have to be patient and wait what will come out of this discussion.

will be continued ;)

Transfusion at home

Last wednesday I went to the hospital for my check up. I was very anxious cause today we will discuss the possibility of bloodtransfusion at home. Earlier this year I gathered some information about this subject and was informing my hematologist about it. I know that in some parts of the country this is already done, and even some hospitals in Amsterdam are doing this quite some time, but my Hospital is not familiar with it. Time for me to take the first step ;)

I will have the transfusion at Peggy's house, she is nice company to spent the day with ;) and there are enough back ups if something goes wrong. We just have to call a friendly neighbour or family to take us to the hospital if thinks go bad.
We just have to askPeg's GP if he want to be standby.


I learned that there is a specialized team to do this. They collect the checked packed cells from the bloodbank, and bring the needed antidote incase of an allergic reaction. They'll take everything to my house and connect the infjsionline to my port a cath. When they've done the necessary check ups, they leave to see the next patient. When the blood has dripped in, they remove the needle and take the empty bags back to the bloodbank.

To bad that I have to wait for the next transfusion to come :(
There are some legal aspects that must taking care of. The chief of the bloodbank and the head of the Hematologist ward will have to give their permission and then everything will be okay and we can start ;)