Don't know where to start, my brain really isn't what it used to be. Broke down at work because I felt like the glass was overflowing and it just broke for me so now I'm on sick leave and trying to recover and do good things to get my energy back. I have so much on my mind all the time and every time I try to let my guard down and let things go, things happen so it just doesn't work. Trusting the healthcare system is like trusting a 5-year-old with a candy bag in front of his face who promises not to take any candy when I'm not looking...well, about that. I am amazed at people who blindly trust the health care...if I had done this, my son wouldn't be alive today, for example...absolutely sick but that's the case...god knows what would happen to Freja if I had been a cute little lamb and just sat and fluttered her eyelashes and let the healthcare take over... well, then nothing bad had happened, I can talk about.
We have seen and thought about Freja for a while and that she has a strange behavior again with her vision, has started to squint and tilt her head sideways, does not want to use her glasses... has exactly the same behavior as before we left for Gothenburg before she got his latest glasses. When she then had them she refused to be without. Then she sits close to the TV and I can't have the sofa closer, would have to buy a built-in TV so she can see properly because she has been sitting close even though she got new glasses, yes close to be normal but now of course it's even worse . She has her cell phone etc. 10 cm from her face, to see well she almost touches her nose with the cell phone or tablet. Sitting and googling for grants for the visually impaired to be able to buy her a large television because it must count as an aid?
Yes, in any case, I have pressed the health care-eyes in Umeå about her problems and behavior. They checked her and everything looked so good (I wasn't there then but the old man) My old man thinks they should know what they're talking about, but the problem is that I later found out that no doctor had looked at her. Freja has Marfan and it's a fairly well-known problem because they're loose on the inside and she already has lens luxation, so I don't know why they didn't look properly, but I intend to report this further. Have chased the specialists in Gothenburg and Alf, who is the country's best ophthalmologist for children, said that either she has cataracts or the lens is loose because her behavior describes this.... Then why doesn't UMEÅ react???
Well, Gothenburg can press for a doctor to look at her eyes. After 1.5 months a doctor checks her and it turns out I was right, eyes could not even be measured so this means it is loose and needs surgery. So at this moment we are sitting and waiting for the OP appointment in Gothenburg for a new lens in the eye, an operation we had hoped to do when she got older towards her teens.
At the same time, I am waiting for information from Försäkringskassan about extended care allowance because Freja can only cope with daycare 12 hours a week due to her pain in her whole body which causes fatigue and headaches. First got a rejection where they compared her concerns with other five year olds and didn't see any concerns so I had to fight again...it's amazing how they can compare a diagnosis that 1 in 10,000 gets???? A normal five-year-old can play as much as she wants, but not Freya because she can't stand it. She can't play in any way either because she's loose on the inside, plus when she played like any other child before the summer, she got a fracture from excessive load.
If you don't think you get stressed and exhausted from my job I do, they are crazy, I feel so fucking alone in this and no one understands, it feels like.
I've missed all the online meetings where I would have been able to talk to others who have the disease and other parents, but then I've worked every damn time.
Excuse my profanity but I just want to get help and support from those who understand me, just want to lay down laughing with frustration.
Why I study energy medicine is about Freja! I am doing everything I can to help my child and myself heal but it is hard when I am broken down by stress and adversity of course and money!
At the same time that we were informed that Freja would be operated on, I learned that my beloved grandmother was on palliative care, this really couldn't come at a worse time..thanks for the thought, it's going well now :(
She died on December 8, 94 years old so her life was long and meaningful but the tragic thing is that I don't know if I can attend her funeral because of Freja's OP or if I can even afford to go down, it pains me but it is just to swallow and move on.
I spend so much time writing and googling so this is not wise to get help with her diagnosis. I had wished that when you were informed of the diagnosis that you were served everything you could turn to, support groups, etc. but I have to dig mostly myself into the disease, but maybe that's just because it's so odd.
If I had my way now, if I had the money, I would have stuck somewhere warm and laid down on a sun lounger for a week and slept. For a long time I had such pain in my body as I have now and got higher blood pressure, this is the effect of my stress and stress I've had since I was little from all the trauma I've been through so my body can never rest, symbolically never fall asleep without keep one eye open and the sword on the stomach to quickly go to war if necessary...this describes me! A constant battle....but I'm working on healing.
I'm like a little absent, forget everything and can stand or drive and not know what I am or why I'm standing here...time that disappears for me. Anxiety in the stomach and around the neck and the heart sometimes gallops so I get really scared.
Freja's mood is terrible, especially in the afternoons when she has been to kindergarten...the more tired/painful she is in her body, the more troublesome she becomes...she really can't control herself for five cents, this takes so damn much on her energy so it is not wise.
Then I came up with another thing, Freja has her heart examination now in February (It was two years ago last time) and this is super important to do when you have Marfan because the aorta can expand on them. I had to call children's heart and consult with them because she is going to have surgery and if it is like the last time, it was many hours under anesthesia and then I really want to know that no change in the heart has occurred in these two years.
Write write write, that's the only thing you do, then you get a reply and then you write again and have to wait for a reply. Expecting to have normal dialogues between two people today verbally is out of date...now it's only 1177 and the answers are delayed like hell all the time, first a secretary has to take care of it and pass it on then doctors have to look at it and think a turn and then answer when she has time and the worst thing is when you feel you want to answer and ask the doctor's answer, it takes even longer....
If waiting isn't stressful then tell me how to handle it in a soft and fluffy unaffected way? Feels like I'm doing nothing but constantly waiting for other people's decisions in most things concerning Freya now.
I really need right now to find the calm, my time for recovery, I think that when I start properly with meditation and healings I will find that calm, so really now is the time that I have to get with myself...and get rid of the fatigue haha. However, you mustn't forget that you live in the North where the sun barely rises right now so the days are insanely long and luckily it's only a short period and thanks for the snow we have, without it it would be terrible. The snow gives light and energy!
Well, thank you for this time, tomorrow I will continue to struggle to keep my head above the surface for Freya's sake.
Love and respect
Petra
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