Aftenposten Aften published my article 27.6.08

In Fridays issue ( dated 27.6.08 ) the article I delivered some 3 – 4 weeks back finally got published in the evening issue called Aftenposten Aften! I will post links to the article as soon as it gets published on Aftenposten’s web site.

They publish it on Aftenposten Debate-section on the net with a delay. I will publish it myself maybe even scan the paper-version of it and post it here. Aftenposten is Norway’s largest newspaper. I’m asking a few hard questions in it, and I am hoping for some real answers, but I’m not holding my breath for them exactly…
(I’m away from home, so don’t have the article available, will of course translate to English for you all asap)

Translated letter about my struggle to get CI before I die of age

This posting, originally a Norwegian e-mail, has been edited and shortened in order to adjust it to the blog and remove persons names and roles:

I was at Rikshospitalet in order to “nag one more time” today. Have moved up 10 spots since April, and is now in the 49th place. With the pace of operations since April, It will be my turn sometime autumn 2009…

I’m now in my second year in waiting for my examination for CI-surgery. (have had good opportunities for permanent employment in Telenor just prior to the worsening of my health condition)

The otolaryngology-department (ØNH) tells me that Rikshospitalet recently have established their own coordinator for the “Faster back to work”-fund. (new readers can read this general document about the Norwegian effort for a more inclusive work life)

The ØNH-department are as per today NOT “connected” to this fund.

A few weeks back I made my physician to resend the application according to instructions found on this page:  http://www.nav.no/805343159.cms (the link is named ” Fastlegebrev 15-03-07 (pdf)”.

ØNH received this new application , but tells me in clear text that it won’t do much good as long as it hasn’t been sent to the “Faster back to work” coordinator. I ask if they can send the previous application to said person for me. Answer is: sure, but it won’t do much good. Better if you send a new one from you physician. (???)

ØNH also adds a question mark as to wether there exist enough medical expertise capacity enough to do any operation outside the ordinary queue under the “Faster back to work”-fund (it’s not supposed to suppress the ordinary health-queue) (it is a silent referral to the recent budget cutbacks in here…). They understandably decline to answer my questions plainly. It isn’t their job to say anything about these things anyway….

My physician re-sent the application to given address/person yesterday (this is the 5th application we’ve made in order to get me examined for the CI-operations).

I hope we can work together constructively in order to find a quicker solution for me and a lasting solution for others who most certainly will follow me.

It is a hopeless situation to spend these years in a health-queue. And it’s a waste of welfare money, to say the least! These money could have been invested in my health instead, they would have given a much greater dividend to Norway Inc!

Use my blog for what it’s worth! A lot of information is there going some time back… I also hope to announce news about response from the Norwegian Treasury Department soon. I have received word that it has been worked on a response to my letter to them.

Parenting, oncoming deafness and it’s effect

I am a single parent. I just had my son over for an extended weekend before he takes a long summer vacation with his mother.

My son hasn’t reached puberty yet, and hence has a boyish thin voice… Unfortunately this is the kind of voice that strikes me the worst, since it is in the frequency-neighborhood where I’m loosing hair-cells in the cochlea nowadays. It is the frequency of my tinnitus and it’s where my hyperacusia hits me the worst…

He is a joyful kid with a lot of energy. He has tried my hearing aids, and understand that it hurt my ears that he shouts, but as most kids, he can’t remember everything at once.

I have to hush him when he forgets. Which he follows most of the time (unless he is upset with me).

What troubles me in this, is my own condition. As a result of having my son around, I quickly become exhausted, because as most kids he likes to communicate, and we talk… He is signing some, but it takes effort to learn the signing properly, so it ends up with help-signs only. I don’t I have the energy for learning it… It’s a paradox… I need to learn it, but I’m to exhausted to even go to school once a week (I tried!). The only thing that could help me is the operation, and for that I have to wait…  It’s so wasted to wait!!!!  Aaaarggghhh!

Anyway, the hyperacusia and the recruitment and the following fatigue affects me mentally, and sometimes I can loose my self-control a little, ending in me being too harsh or too abrupt in my reactions. So I find myself using more energy trying to stay in control, rather than raising my son and using my energy positively. I don’t feel like I have a choice…

I have to use the first hours of my days do get things done, because by noon I’m exhausted and

run on will-power and love… At his bedtime I feel like I have the mental capacity as a drunk… Reading-time I have to do without any sound… Just listening to my own voice hurts…

This is not a “normal” life… I need that operation now!

What is the CI-situation elsewhere in Europe?

If anyone has information regarding CI-operations and CI-related health benefits in Europe, I would be extremely grateful for any input.

Do people have to wait for surgery?
How is it financed?
How about the follow up, and re-mapping after the surgery?
What country has the best reputation?
Is Advanced Bionics represented in all European countries? (I might have found out for myself, but I’m on my way to the great Norwegian mountains and fiords, so this is also a memory-note to myself…

Particularly I’m interested in Sweden, Denmark, Germany, Switzerland, Austria and UK. Maybe even the old east-bloc countries are better than Norway in this area? I’d love to hear!

My mother asked me if things would be different if I was a EU-citizen, as apposed to an European Economic Area (EEA) – citizen, which I am, being a Norwegian…

I could move to Sweden if that would speed things up a little bit. That’s the idea, anyway…

OK;

the weather is great and I’m outta here for the weekend! Have a nice weekend everyone!