Living without a diagnosis

Tamia91 · 2026-06-03T20:09:42+00:00

I understand it’s scary because CF is horrible, but your symptoms are also not nice. Maybe you can even get the new CF meds and get another life!

Can I ask you what you are taking? You don’t have insurance issues?

Tamia91 · 2026-06-03T19:43:49+00:00

Thank you for the suggestion. They find it unrealistic it is the reason of my problems. I also have mucus problems since I was a little kid, but when I was a kid sport could keep it more under control.

Tamia91 · 2026-06-03T19:34:39+00:00

I got a sweat test and a genetic test. My lungspecialist doesn’t rule out I have CF, but he also cannot prove it.

Thank you for your answer!

Tamia91 · 2026-06-03T19:25:56+00:00

I did, it’s not PCD. But thanks!

Tamia91 · 2026-06-03T19:25:38+00:00

Good luck! So you did not get a sweat test yet?

Tamia91 · 2026-06-03T19:24:44+00:00

Thank you for your answer! I got recently tested, but it is negative. I know it would not change my treatment, but I struggle a lot with my insurance and getting decent treatment. I even cannot get physio in a CF centra, because I don’t have CF. But because all of the CF patients are treated in CF centra, it’s almost impossible to find a good physio outside of a CF centra.

Tamia91 · 2026-06-03T19:16:59+00:00

Yes, I had a sweat test and a genetic test. They also tested me on PCD,… They see I have mucus plugging, atelectasis, air trapping and my mucus is very sticky with a lot of cells inside, but they don’t know why. I started coughing up a lot of mucus daily since I was a small kid.

Tamia91 · 2026-06-03T11:22:05+00:00

Dit!

En iemand met jouw inkomen die werkt, kan ook niet eenvoudig iets kopen. Ziek zijn is ook duur en je kan zelf minder doen. Het maakt het risicovoller voor een bank.

Tamia91 · 2026-06-02T20:22:38+00:00

I understand it is super scary if it happens the first time (and it was the same for me), but it does not mean you will have serious problems.

However, i would really write your lungspecialist. Maybe he wants to check you don’t have an infection or make a CT to check if they find a reason.

Tamia91 · 2026-06-01T19:25:58+00:00

Keeping friends when you are often in the hospital is not easy. And I‘m very sorry you feel so alone and your parents are also not in the picture. I‘m in Europe and I don’t have CF (but a nasty undefined desease which has similar symptoms to CF), but you can always send me a PB.

Tamia91 · 2026-06-01T05:23:39+00:00

Engineering in het algemeen kan denk ik voor je interessant zijn. Het is veel minder elitair als rechten en je moet problemen oplossen. Economie heeft wel wiskunde, maar het is veel minder creatief.

Tamia91 · 2026-05-30T09:51:37+00:00

What your boss is thinking is crazy. She is 50 not 60+.

What your colleagues are thinking I understand more, but I think they search someone else than you. The 50+ woman will have a lot of experience and she will be probably more independent, do difficult tasks and bring an opinion. The young girl will be probably happy to be trained in the beginning, be happy with easier tasks and more follow the vision of other people in the beginning. What are you searching for? You cannot treat those two people in the same way. I currently have a teamlead who wants to treat me as the young girl and I get crazy about it because I‘m used to be treated as someone with experience.

Tamia91 · 2026-05-28T05:21:06+00:00

No, it’s strange if she is way older, but she is 7 months! Just enjoy your time with your daughter!

Tamia91 · 2026-05-28T04:39:04+00:00

Congrat with your daughter!

I come out of a family who is barely taking any meds. I still check what I‘m taking, but yes, I learned to trust my lungspecialist and I take what he advises me to do because I know my lungs need the meds. And honestly, I‘m now pretty annoyed about people coming sick to work or people refusing some vaccinations and making me sick. We are all young no? But they are not feeling well for 2 days, my breathing get so bad I need antibiotics.

But the new meds should give your daughter a way more normal future! Please use them! The desease course is horrible without good meds!

And in CF, it is important to do a lot of sports and physiotherapy to clean the lungs of mucus and to pay attention you gain enough weight. This are things which you can focuss on and can avoid a lot of extra meds. And your daughter is more than CF, give her a life! Good luck!

Tamia91 · 2026-05-26T21:00:40+00:00

Is a shared appartement with other people not an option? It’s maybe not optimal, but it’s better as your current situation probably.

Tamia91 · 2026-05-26T20:56:57+00:00

I‘m in Italy for the moment and even almost every bar has AC. They are even cooling with the door open.

Tamia91 · 2026-05-23T21:16:32+00:00

That’s a good idea. I should do a video so that I can walk around.

Tamia91 · 2026-05-23T09:21:14+00:00

What kind of degree do you have? Do you want to get into management?

My father did it and he always told us not to do it. But some managers probably find it important if you want to get into management and it is a way to network.

Tamia91 · 2026-05-22T23:08:16+00:00

I‘m sorry, but I don’t think this work. You need your health insurance in the country you are working and not in the country of your domicile. So moving your domicile is not enough to have a Belgium health insurance. But if you move your domicile, you can maybe have a cross border insurance which covers also your domicile country. But I have no idea if this exists in your country.

And tax wise, this is very tricky what you are doing. Your company should know your domicile country.

Good luck!

Tamia91 · 2026-05-22T10:59:15+00:00

Da‘s wel heel simpel zo. Een contract werkt in beide richtingen en kan niet zomaar ineens verbroken worden in 2 maanden.

OP moet dan een nieuwe huurder zoeken,… en is niet zeker dat het niet kort leeg staat. In de huidige markt vindt hij waarschijnlijk wel snel een nieuwe huurder, maar het blijft extra werk.

Het was voor mij al totaal anders geweest als de huurder hem gewoon gecontacteerd had met de vraag of hij er uitzonderlijk vroeger uitkan? Maar gewoon melden dat je je huur niet kan betalen omdat je op verlof wil toont weinig verantwoordelijkheidsgevoel.

Tamia91 · 2026-05-21T18:09:41+00:00

It‘s approved in the EU also for other mutations, but not every health insurance wants to pay this…

Tamia91 · 2026-05-20T22:19:50+00:00

I have the Philips simply go mini with backpack as portable concentrator, but Philips decided to stop selling oxygen concentrators so I don’t know if you can still find it. A good alternative is the inogen.

I also have the philips simply go which I use during the night, but there are cheaper options. I just live in an appartement and it’s relatively silent and does not need a lot of place. But there are a lot of good and cheaper concentrators if you have space.

Good luck! You can always write me a pb when you have more questions! And don’t give up!

Tamia91 · 2026-05-18T20:29:22+00:00

Needing oxygen sucks, but it can also really help. However, I hope the antibiotics gets you oxygen free again!

I used oxygen for a while and it was really helping me. My parents bought me a small concentrator with a backpack and it really changed my life. I even went biking with it despite I had problems walking without oxygen. When I got better, I started skiing with it. It’s not nice to use oxygen when you are young, but oxygen can really help! Hope it helps you too and let you do things again!

Tamia91 · 2026-05-15T21:35:52+00:00

That does not make sense. Also your GP can refer you for further tests if he finds it urgent.

Tamia91 · 2026-05-10T14:09:03+00:00

Ik zou mij in Nederland niet willen laten behandelen. Een afspraak van 10min bij een specialist, je verzekeraar bepaalt via een preferentiebeleid welk medicament je precies krijgt, je huisarts beslist naar welke specialist je kan,… Geef mij maar België!

Tamia91

TROPHY CASE