I'm new!!!!

[isi14]

Hi,im new on this site and i have the same problem that all of you have.I have to say sorry for my english because im from Albania and i don't talk very good.Nice to be here and nice to meet you virtually️️


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[mrtmeo]

Welcome to the family, Isi!
Your Engish is fine.
I'm sorry you have this disease, but you have come to the right place for others experience and help.
You can add your story in the introductions area.

[Pete]

Welcome, isi!!!

I'm glad you found us, but sorry you needed to. You may be our first Albanian Weggie.

There's someone on this forum 24/7, so you will always be able to get questions answered, receive advice, or just share the good, bad, and ugly of the "wegs experience".

When you have time, please post your story in the new members introduction thread.

I hope you get help here and return to good health and a full life.

[isi14]

Thank you,im glad to be here.i have to said that i was scared to enter here by the things i have to hear but anyway i make a decision and i want to be part of these group.I am 23 old.As i say i am from Albania and i discover these desease last year at october.


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[isi14]

I discover it in my country where i make a biopsy and than i came in italy to my sister to cure my desease because in country was very rare.Was something unexpected for me and my family.im really scared.I want to know more about my problem but i scared to.I feel that now as in the family.Nice to be here guys


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[Pete]

The good news is that with proper treatment and some effort on your part, you should be able to return to a nearly normal life. The best advice I've gotten about this dumb disease was from the doctor who diagnosed me: Take your medications as directed and live your life as fully as you can. To which I might add, be very aware of how you feel and call your doctor if you don't feel right.

[isi14]

Thank you Pete ️️.Im so scared,and sometimes i feel demotivated.


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[marta]

Zdravo Isi,

My name is Marta and I am originally from your neck of the woods. I was born in Bulgaria, Sofia, but I live in Canada now. Came here when I was 10 years old with my family.

I'm sorry you had to search for support for this crappy disease, but you've found the best forum on this topic in the world. Truly. If we have to go through it, this is the Wegener's family you want in your corner. From my own personal experience, the group on here when I was going through the worst time in the disease process, saved my life. There is a whole new group of people on here now, so they will be your family and the people who will hold a special place in your heart when you come out of this on the healthy side. It's a rough ride at first, but mostly because it's new and you're learning so much, so quickly. In no time, you'll know more about this disease than 95% of all the doctors out there. Take care, ask questions, and insist on information throughout the whole process. Have your sister come with you to doctor's appointments and be your eyes and ears when you're feeling too sick to ask questions. You will get through this, but it's going to take some work. Pay attention to your body, there is now several things you need to learn.... are you feeling crappy on a certain day because of the disease, because of the treatment or have you picked up a cold.... you'll learn the subtle differences, but the early days are a big learning curve. Stay strong, stay positive, stay inquisitive, and keep us posted. Best of luck to you with all of this. It will get better. I promise.

[isi14]

Thank you soo much Marta for the beautiful words,i feel that i need these...i was thinking that was just me in the world.I feel full of hope between friends like you.Thank you dear!!


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[marta]

Thank you soo much Marta for the beautiful words,i feel that i need these...i was thinking that was just me in the world.I feel full of hope between friends like you.Thank you dear

That's the problem with autoimmune disease. We all feel so isolated in our own 'rare' diseases, but in fact people with other autoimmune diseases are going through a lot of similar things as you and me. If you can't find someone in your area with WG, try talking to people with other autoimmune jobbies. Misery loves company (an English expression that took me a while to figure out ) but it's nice to have support from a group who is going through the same stuff. You are not alone. Use this forum to get your feet under you, get stronger, and more confident with what you're dealing with, then you can go out and do all kinds of things that help you and help others. You will do fine. Remember that you have to approach WG healing like a new baby learning to walk. Baby steps. Things get better slowly... very slowly, so focus on celebrating the small victories. It'll keep your brain more happy and keep you focused on progress, rather than what's not working. You're alive. I just lost a friend yesterday in my town to Vasculitis, and she's left behind four kids and her husband. It's because the doctors didn't treat her in time - even though they knew her diagnosis. So a very good place to start is gratitude that you landed in the hands of a doctor who recognized it in time to get treated. Gratitude for the opportunity to go to Italy with your sis and get good treatment. Focus on the victories. There are lots - if you're still alive.

Take care Isi, and feel free to write me anytime with any questions you might have. I don't check often, but I will reply as soon as I see it.

I understand all the Slavic languages, but never got Albanian. We had TV from Zagreb when I was a kid, so I learned Yugoslavian, but Albanian is way different isn't it?

All the very best.

marta

P.S. Look, I've been speaking English since 1977, and I still can't put a sentence that makes sense together.