View Full Version : I have a hope! and try not to give up. But what does it cost?

08-21-2011, 01:55 AM
Hello dear community members! :)
I got very happy when found the link while researching about my dear lupus once again.

Let me shortly introduce myself.
I m Kateryna,27 y.o., originaly from Ukraine, living in Germany for last 1,5 years (i noticed that most of the members are Americans or Canadians, but it might not mean anything but that the decease is more common and highly treated back there). Anyways, i ve been diagnosed with SLE in 2003-2004 and it took at least 2 years for doctors in my country to get it. Before SLE has been finally identified by one really great local rheumatologist i have gone though so many symptoms that are well known to all of you. Since that time i had more or less 2 desease peaks when it was as bad as it could be and i experienced all the bouquet of symptoms (joints pain, kidney land lever ow function, hyphothesis, heart problems, huge depression etc.).
Now when i moved to Germany i am trying to understand how developed the lupus treatment here and which help i can get. So far without big success. I have just got a doc that is supposed to be a specialist in the area but he was quite superficial while talking to me for the first time and i got really upset and a bit depressed again. Well, anyways i got some new treatment or better to say corrected version of my previous one and i keep consulting my health expert back home through my mum.
Well, to make the long story short, i am very happy to join the community today and got to know people who suffer the same illness that i do. I know all the pain that you experience and i want to cheer up myself and all of us! I started to love the illness somehow or at least i am learning how to do it. Somehow it gives a lot of power and hope when you care about it and choose to be an optimist no matter what! I beleive that this approach gives you much strenghs and lupus also keeps being quite and manageable :)
Would be great to hear back from you!
My best,

08-21-2011, 02:21 AM
hello Kateryna,
welcome to our cyber family.
there is members here from all over the world.

i am happy you found us.
many of us take years to be diagnosed as well. western medicine does not mean better medicine.
i have been living with this desease for over 30 years, but only diagnosed 3 years ago.

again welcome.

08-21-2011, 04:14 AM
Hello Kateryna, welcome to our family! I am from the US and can tell you it took me years to get diagnosed. I had symptoms in my 20s and was diagnosed 5 years ago. I am 53! By the time it was figured out my thyroid was trashed, I had depression, all kinds of organs inflamed, etc. I sure do have great docs now.

I love your name! So nice to have you join us.

08-21-2011, 05:11 AM
Ahh... so nice to be welcomed like at home :) Thank you guys for your support! Now i feel that my situation with the diagnosis is not so bad.
My best,

08-21-2011, 08:26 PM
Hi Kateryna!
I'm not yet diagnosed with anything myself, but my symptoms are very similar to that of Lupus, so I imagine that when I am diagnosed, that's what i'll be diagnosed with.
So I can't really help on the doctors front, or with experience, but I do know the pain that we all go through, and the sickness, and trying to live a day to day life with a chronic illness.
Your English is wonderful, by the way :)

Welcome to the forum! I'm glad that you've found us, as i'm sure that you dont know many people (or any), going through what you are, in your real life right now. The internet has been really great for connecting so many people who have chronic illnesses, and helping them not to feel so alone.
I hope that you like it hear, and learn more about your disease and coping with it. You definitely have a great perspective on having the disease.

Welcome again!

08-21-2011, 08:40 PM
Hello and welcome to WHL! Have you have heard from those before me we have members from all over the world. The only real requirement is that you speak some english and that isn't a requirement either but you may be talking to only yourself! LOL

Lupus is a difficult diagnosis to get in any country not just yours. Most of us do just as you have done and go up and down and round and round trying to get someone to do SOMETHING to help us. You will find so much information here. There are so many threads to look through and so much information to gather! If you have any questions feel free to post it (as you did this one) and you will find many people wanting to help.

Once again let me welcome you to our WHL family. I look forward to getting to know you!

08-21-2011, 09:15 PM
Welcome to the WHL family. We are glad that you have joined us, and we will all be happy to have you join our conversations.

08-22-2011, 08:13 PM
Welcome Kateryna! It's nice to meet you. So glad you found us! Find a comfy seat anywhere, put up your feet, have some cyber chocolates, and chat away! :)

08-23-2011, 04:54 AM
Hi Kateryna.

Welcome to WHL.
Where in Germany do you live? I am from Germany, but I've been living in the USA for 30 Years now.
I am a member of a german lupus forum, maybe I could do some research for you and help you find a good specialist.
Let me know how I can help you.


08-23-2011, 11:03 AM
Hi Debbie,

thanks a lot for your reply and hand of help. I live in Bonn now. There are not so many options with rheumatologists that
i managed to find so far and it was so hard to get an appointment after all and i am not so sure that this is the right doc for mme. Would be great to have some more options.
Can you please share the link of german forum. I would like to join.
Thanks a lot!
Take care

08-24-2011, 03:19 AM
You've got a PM. Hope it helps.


08-24-2011, 03:41 AM
thanks debbie,
just another example of why i love it here.