From emptiness to a little revenge!

Ok, doctor's visit yesterday which took a good while...it was discussed how dangerous it can be with dietary supplements and not scientifically proven blah blah blah...asked the doctor to leave the very word supplements for a while and listen....Freja who is a heart patient is advised to eat good food, i.e. follow good dietary advice etc... Yes, then she should eat fish and a lot of vegetables... HOW MANY KIDS PICK UP VEGETABLES WHEN THEY ARE HER AGE???? Nah, it's quite common, what I give Freja in the morning is a drink of a mix of different vegetables and herbs and when did it become dangerous to eat carrots and broccoli?

I get so tired of these discussions and we live in 2022...haven't we come further than that in our development? Yes yes, enough about that...

The discussion I want to have with the doctor was mainly about her bladder problems, not feeling when she urinates...the doctor had never heard of bladder problems in Marfan syndrome called Duraectasis which affects them between 63-92%....he wondered questioningly what it was and looked very skeptical where I found that information...

I'm stunned and dying inside....this is all over every Marfan page you can find all over the planet!

I wanted Freja to have an MRI to rule out both duraectasis and tethered cord, but no, we don't do that here, he said, and it's a financial issue, so Freja has to keep pinching herself, because the doctor thought yes, to give a stomachic to begin with and put put her in a diaper again, he could not feel by palpation that the incontinence would be related to the disease in the joints.... (again, these conditions/diagnoses are only seen by MRI)

As you read this, how do you feel in your bodies? Do you feel anger like me? Do you feel the frustration? It's only a matter of time before she gets teased for this and then it's over, it's enough for a child to be teased at a steady age and it leaves its mark...

In January, Freja will continue to pee herself and wear diapers now that we are getting cold in Norrland so that it will be easiest for her and us...oh my god.....

Yes, then we come to this with the eye examination at Sahlgrenska in Gothenburg....

We were not allowed to go with both of us, the doctor thought, there was no medical reason....

Then you get the cheapest form of travel, TRAIN for 12-13 hours on a seat...Freja can sit still for 5 minutes and has a lot of pain to deal with, she urinates constantly, has migraine headaches, motion sickness, in her nursing plan it says she has to stretch her body in a supine position and sit for so many hours....how are they thinking??? We wouldn't get a taxi, but I myself will have to carry a giant bag, walking, plus a pram because Freja can't walk longer distances on asphalt because of the wear and tear on her body... if she falls asleep on the train and you want to sit on the dass for a while, who cares my child then? Totally sick and I just want to cry myself to death...

Sat on the phone today and got hold of the nicest person on earth at the eye clinic in Umeå, this woman was so upset about what I told her and of course I couldn't hold back my tears because I think we are being treated so badly and not listened to... .she just said that it shouldn't happen like this, I'll see what I can solve. The lady in question called me back after 5 minutes and had then solved everything for us, we BOTH get to go with Freja (she's only 4 years old so it's a matter of course according to her) and we get to fly down, we get a taxi and e arranging the hotel! I started enjoying myself like a child in her ear so she almost started laughing herself.

The gratitude I feel now is indescribable, that we get to be together and if we get bad news we can hug and be together. Thank you, kind person, angels exist!

Have also recently been in contact with experts in Stockholm about Marfan syndrome and emailed about the problem regarding Freja's urinary incontinence and the treatment I am subjected to here in Umeå...waiting for a response, they can write that she should have an MRI because this problem is common and it will a bit like a slap in the face, unfortunately, to those doctors who claim otherwise. I told the doctor to include that he got a damn troublesome mother on his neck who is always 17 steps ahead....so he's going to have a tough time, I'm not giving up!

Now I'm going to take a weekend, blow off steam that the Gothenburg trip is over but the rest of the fight continues.

The void has been filled with some hope and energy again and I can brush my shoulder and say, good job mom, you're doing it right, keep believing in yourself!

Love and Respect with a naked picture where I have just cried with happiness and don't look wise, the naked truth !!!!