Healthy Lifestyle For Wegeners Patients to Prevent Relapses

**MarN** · 04-09-2013, 11:22 AM

Hello everyone.

I am glad to find this forum.
Thank you and the founders of this site to give the patients useful information and the opportunity to exchange their ideas and experiences.

I have a question about healthy lifestyle for Wegeners patients to prevent relapses.

How can I get in touch with a top Wegeners researcher to discuss my life plans?

Actually I have been dealing with this condition for 12 years with several relapses, severe side effects of medication and illness and 8 surgeries.
Finally, last winter I got rid of Prednisolne and now the dosage of Azathioprine is about 37.5 per day.So I guess the condition is under control now.
But I have read in several research papers that over 50% of patients will experience relapses after remission!
So, a controlled and healthy lifestyle is the key to prevent relapses!
But how?

I am admitted to a graduate engineering program in the US , but I am so scared to start the program, because ,as I have read and experienced; patients should have an easy going lifestyle, have positive mental state and should be away from stress, weariness and sleeplessness. They should spend time on their regular exercises and Yoga exercises, visit their doctors and have laboratory records (ANCA,CBC and Urine analysis...) every month or two; take their medicines regularly, be checked up every now and then by other specialists, have Sonography or Mammography records every year (for women), and have a healthy regimen(preferably organic foods and drinks).

But as it seems, competitive lifestyle of graduate studies is completely against this situation and can cause relapses easily.
Besides, I guess this method of controlling the condition which I mentioned above, should cost a lot for an international student in the US (even with student medical insurances) and would be so time consuming.

I would be thankful if you could kindly help me find the answers to my questions.

With regards,

**Dirty Don** · 04-09-2013, 01:45 PM

Welcome MarN, sounds like you have your arms full. Graduate school is no easy task...the question you need to ask yourself is "can I handle the stress?" WG is what it is, and certainly has links to stressful behaviors...can YOU control your stress levels with the possibilities put forth by grad school and the disease? The situation you're in almost begets an age old question...who/what is in charge in your life and how do your values match up against the odds? Is your life viewed from within or based on outside activities? This is poorly worded, but I hope you get what I mean. There are many on here with WG, yet defy the odds...and we have lost a few too no matter their valiant efforts. You can't predict the future accurately...just live today in hopes of tomorrow...best of luck!

**drz** · 04-09-2013, 03:34 PM

I know that I could not successfully repeat my first graduate school routine in my present state of health, but my daughter did succeed in doing so after an equally severe health crisis and much more demanding life style of a family and three children in school. But she has much better coping skills and stress management ability than me. When I did my second graduate degree many years later I felt no pressure or stress and rather enjoyed it cause it was just a luxury thing I was doing for fun, not a necessity to become employed and earn a living. My daughter had a similar outlook and did her degree for similar reasons and seem to thrive from the stimulation. But she was also very successful in a very high stress situation than very few could handle before her health crisis almost killed her.

We all differ in our stress management skills. Do you feel pressure to complete the program? As Don said, "how are you stress management skills"?

Some programs also allow a part time participation so degree takes longer but it is less demanding on one's time and easier to do. Is this an option?

The Vasculitis foundation lists the Weg research projects underway and the names of researchers at several major facilities so that might be another place to start. If you trust your treatment team, I would ask for their advice and listen real closely to what they say. And also ask your friends who know you what they think about your ability to do the program successfully.

Some Weggies can do impossible things (climb MT. Everest, ride a bike cross country, race dogs hundreds of miles and other things) that few healthy people can do so having Wegs doesn't automatically preclude you from anything.

**MarN** · 04-09-2013, 05:38 PM

Dear Don:

Thank you so much for your answer.

I learned a lot.

Wish you the best.

With regards,

**MarN** · 04-09-2013, 05:42 PM

Dear Drz:

Thank you for your help.

Wish you health and success in your life.

With regards,

**mishb** · 04-09-2013, 10:29 PM

Hi MarN,

Both boys have given you excellent advice.

I just want to say, welcome to the forum and I hope you can achieve all of the goals that you set for yourself.

Twelve years with WG is no mean feat and you certainly can help many of us on here.

**MarN** · 04-10-2013, 01:02 AM

Dear Michelle

Hello.
Thank you for the the kind words.
Yes, they were great and I am thankful for their advice.
Actually I am not really good at stress management and have to work on this ability.
I would be happy to help.

Wish you the best.

With regards,

**Dirty Don** · 04-10-2013, 02:18 AM

Originally Posted by mishb

Both boys have given you excellent advice.

Boys? BoyZ? drz...who's she talkin about? Looks around room, spills coffee, BOYZ!?!?! Mich...gotta luv ya! How do you know us so well!!!!!!

**annekat** · 04-10-2013, 08:08 AM

Hi, MarN,

I can't really add to what was said, but I'm glad to have you here on the forum! It is the best, and I knew that from browsing here before I even knew for sure that I had Wegener's. I can't imagine any better place to go for knowledge about the disease and friendship and support from others who have it!