Tears and tears, I can no longer cope ... Feels like everything starts about where I was 19 years ago when I got zero help with the son who had severe migraines when he spit and was sick 4 days a week and the Social Insurance Office felt that he did not Was sick enough to get help with compensation, I was isolated in the home for 7 years with a son who could not go outside the door and completely without compensation.
Freja has Marfan syndrome and migraine In this case is a fish in space I feel though Freja is of course affected by migraine she is included in this Marfan package.
Now this case, the insurance company struggles with me about the month's compensation.
Got "rejection" they didn't think she was "invalid" enough, I thought I had to call and check what they mean when there is too little about the disability. A woman I spoke to said that their medical adviser (a doctor has judged that there is not enough "worries" as it is now) I ask what they founded on? And what kind of doctor has looked at her case? She replies that she does not have a set diagnosis and only operated one eye. I was amazed and answered the man that what did not diagnose? Haven't you seen all the records? The last medical opinion was in December 2023 where she has a nursing plan plus that I have nursing allowance and that she also operated her second eye in January 2024. The doctor has chosen to look at what he has seen. The woman did not even answer when I asked her why she did not look at all the records that an operated eye three years ago does not mean a shit with the problems that exist today. Freja has been indoors now for three days because she is tired and is in pain in her body. Marfan is very difficult for some people and they are really to be invalid when it comes to restrictions in everyday life that she cannot and be allowed to do or can.
The woman was completely uninterested to listen and just said that their doctor's expert judged her that there are not such big concerns at present. Thus, they have not done a total investigation of Freja.
She replied that you still do not get any money until she is 18 for them e locked. Yes I know I answer that is part of the insurance yes, but then it is monthly compensation that I press, well she said and said but she does not get for Marfan syndrome does not cover it ... Feels like this person talk to herself Myself all the time and I really take something, why talk about the fact that at present the doctor felt that there were no worries and at the other moment say that she does not receive any compensation for her diagnosis ??? Heart problems and joint concerns, fatigue, visual errors and the list is long on worries that go under this diagnosis and my child is limited and will not be able to live exactly like other people and my child who is 6 years old has severe pain in their body and all that it means ... you say that this whole process and this wait is completely wasted .... I got no answer.
The only thing I can do is cry I feel, I can not fight with the fuck everything I do, I just want a "normal" life and get the power back. The only thing I want is for Freja to feel good, it is really the only wish I have. When she suffers and feels bad, I suffer.
I don't know what to do ... get so sad when you know how many people can fool themselves for compensation and I don't understand how they are doing? I myself am going on my knees now and crawls and did not have my wildest imagination that they would give me this poor message for a child who has a diagnosis like 1 at 10,000 sheep and who will be drawn with it all life and also where we do not Know its exit about the future, we can only hope she does not get concern with the aorta.
I am stunned and struck, when innocent little people like my child are affected, I am awakened by such disgust at handing out financial support to people who really do not need it and cheat on it. I am damn damn ending as it is now and feel like a crap, failed and helpless and take off every fucking sacrificial jacket that may be sitting on my body. I try to imagine that I have a lot of energy of pure desperation because now I have been on sick leave since November and I do not get better and the anxiety increases every day that goes off the press to make money while I fight and struggle with my child ... I don't know which child to stand on. I am terrified and collapse, get a stroke or something for the brain is crazy foggy :(
We all people are different and I am who I am and now I have lost the energy, I can not just wipe things away and be released that everything is as usual no matter how much I wish it was.
I need help and get no one and now the battery is over.
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