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 virtually[emoji5]️[emoji5]️


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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[emoji120].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[emoji51].I feel that now as in the family.Nice to be here guys[emoji6]


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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 [emoji5]️[emoji5]️.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. ;)

[isi14]

Is very nice to be here,and is nice to talk with you Marta,thank you.Im engaged with a wonderful man,adorable we love each other so much.we adores babies and im so afraid if i would have the possibility to have babies. Im worried about these[emoji17].



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[isi14]

P.s albanian is very different from others languages[emoji57].
Your english is adorable.......


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[Debbie C]

Hi isi and welcome to our group. I am glad you decided to join. If you EVER have any questions or just want to talk to someone this is the place to come. In Itlay,do you have a good dr. that knows about this desease ? What medicine are you on ? There are several people your age on here that have gotten pregnant and have had healthy babies,so don't worry about that to much know.Stress is not good for you ! Take care of yourself and if your are tired alot,it is a side effect from this desease and the medicine but in time it and you will get better:hug2:

[isi14]

Hi Debra,and thank you.I am in the departament of rare desease,and of course that my dr know about this desease.As i said at first i have taken predisone 50 mg and gradualy my doc slow down the dose in 5 mg that i am on now.I have done cyclophosfamide last year for six months separates in periods.Now i have predisone 5mg,losartan 50,ramipril 5mg,mofetil100mg and vittoryl for cholesterol.[emoji57]


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[isi14]

P.s Sorry about my english[emoji111]️


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[annekat]

Welcome, Isi, and don't worry about your English. We can understand what you are saying. The most important thing is that you have found this wonderful forum and from now on will feel much less alone with this crappy medical condition. There is a huge amount of variation in how WG manifests itself in different people, and that of course can change over time. We would like to know more about what kind of involvement you have, is it mainly in the sinus area, or is it in the lungs, kidneys, or other areas, too? That you were on CTX (cyclophosphamide) implies that it was more than just the sinuses. It sounds like you are getting decent treatment, but we do hope your doc has a lot of experience with WG and vasculitis in general. If you want to give us a detailed run-down of things from the beginning to now, New Member Introductions would be a good place to do it. I hope you are feeling noticeably better since the start of your treatment. I understand your feeling scared. Others above are correct that things will get better with time. Coming here to the forum is a big step in knowing and understanding more, and feeling better and less scared. As for babies, you can search for threads mentioning pregnancy, and will find that several women have gone on to have babies after being on CTX and our other nasty treatments. So I hope that will be encouraging. I look forward to hearing more from you!:smile1:

[Debbie C]

P.s Sorry about my english[emoji111]️


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Your english is better than my albanian.. :)

[MikeG-2012]

Thank you Pete [emoji5]️[emoji5]️.Im so scared,and sometimes i feel demotivated.

I think we've all been there! We all have our scared moments, but this group will help you get through the scary times! Welcome!

[marta]

Isi, you should ask your doc about Rituxin. It doesn't mess with your ovaries the way that Cytoxin does. If you are ever in a flare situation again, then you can talk about using that as the 'big gun' in order to protect your reproductive organs. Many people have responded very well to it, and it doesn't do the same to you as CTX on many levels. Just food for thought.

[vdub]

P.s Sorry about my english
Your English is better than my English and I grew up in an English-speaking country.... :-)

[isi14]

Thank all of you,i really appreciate this..im feeling in family.God bless you[emoji120]


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[LisaMac]

Isi, welcome! There isn't much else for me to say, you've gotten the run down so far. I am truly sorry that you had to find us, but glad that you'll have support through this. My advice would probably just be to get a copy of your lab results every visit and take notes on the page. Write how you feel, physically and emotionally, on each page. We're all so different, but I can spot a flare on my labs, sometimes, before my body tells me so.

Please let us know how you're doing and feel free to ask questions. There is knowledge here that doctors would probably envy!

Good luck with your treatments, Sweet Girl, and remember that disease is manageable.

LisaMac

[isi14]

Thank you Lisa,you are sweet too.About my labs,the last control that i make the resulta wasnt very good,because the ves was 70,,i have a problem in urina(proteinuria) i dont know how is the name in english.i have to remake the control to see how im going.im am so scared how will gone the things


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[LisaMac]

Try not to be scared, stress makes things worse. Just know that collectively, we on this forum have been through the worst of the worst, and have come through to the 'other side.' It will take time to figure out which medicines work best for your body and which may not help at all. Be patient with the process. Once you figure out what works, your body will take time to heal from this original sickness. Relax, this part could take a long time. When/if you hear bad news just post it, someone will talk you through each step. Please accept a giant virtual (((hug))) from all of us. Girl, you...can...do...this! At my sickest I didn't imagine that I could ever have much of a life after Wegeners, but here I am, plugging away, at my new normal and lovin' life!

LisaMac

[isi14]

Did you have this problems lisa?


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[LisaMac]

Which problem are you referring to? I didn't quite understand your labs. If you can find my story, (I haven't yet learned to navigate this site) you'd see that I went undiagnosed for one year. It wasn't until I literally died of heart and kidney failure while in the ER.

[isi14]

Im sorry lisa maybe im confusing you with my language.i want to said if you have had this results,this problems?Ves and the problem of proteinuria.[emoji5]️[emoji5]️


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[LisaMac]

I can't figure out was ves is, but I didn't know my kidneys were failing, because I was undiagnosed and my drs were mostly concerned with the infections in my ears, sinus, and lungs. My kidneys did heal with Cytoxan and time and I was able to come off of dialysis. I now follow a kidney friendly diet and I rarely consume sugar. Prednisone causes high blood sugar so I cut sugars from my diet early on.

I'm sorry I'm not much help. Does anyone else have experience with this?

[isi14]

Thank you lisa![emoji5]️


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[Jayne 14]

Welcome Isi14
Sorry you had to find us , but as you've seen we're the best gang in town
Always help & advice


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[annekat]

Which problem are you referring to? I didn't quite understand your labs. If you can find my story, (I haven't yet learned to navigate this site) you'd see that I went undiagnosed for one year. It wasn't until I literally died of heart and kidney failure while in the ER. isi, you can probably find Lisa's post describing her history with WG under New Member Introductions from the main Forum page. If it is somewhere else, I think you can find it by clicking on her username in one of her posts. I hope that helps.

[greenjeep]

It is fairly rare in every country. Don't feel alone. I have never met another person with this disease and I was diagnosed in 2010. It would be good to talk face to face with someone, but I don't think that would ever replace this forum. Hope you are doing well and get good care in Italy!


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[mrtmeo]

It is fairly rare in every country. Don't feel alone. I have never met another person with this disease and I was diagnosed in 2010. It would be good to talk face to face with someone, but I don't think that would ever replace this forum. Hope you are doing well and get good care in Italy!


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

You can get in contact with others with weg's by contacting the Vasculitis Foundation here
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

[isi14]

Thank you[emoji5]️


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[mishb]

Hi isi and welcome to the best forum worldwide.

I'm sorry that you have been given a diagnosis of WG, but I'm so glad you have found us.

Like everyone said, your are no longer alone in this journey. Any question you have just ask away and someone will be able to supply an answer.

Take care

[isi14]

Thank you [emoji4]!!I appreciate your support!
Take care you too[emoji5]️


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