Healthy Lifestyle For Wegeners Patients to Prevent Relapses

[MarN]

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]

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]

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]

Dear Don:

Thank you so much for your answer.

I learned a lot.

Wish you the best.

With regards,

[MarN]

Dear Drz:

Thank you for your help.

Wish you health and success in your life.

With regards,

[mishb]

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]

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]

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]

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!

[MarN]

Dear Anne:

Hi.
Thank you for your writing and support.
Wish health and success for you and all the people in this forum.

Sincerely yours,

[rebekah]

I don't think I could add anything else to what's already been said, but I do want to say congrats on getting into grad school!! I know how tough that can be - it's a major accomplishment! :) I really hope you are able to attend. Please keep me posted on what you hear from the doctors... I'm curious as to their opinion. I'm deciding whether I should continue on with my med school journey (pending I get accepted) or put it off for a year to two till I can get Weg's under control and get off this crazy roller coaster ride for a little while. Best of luck to you!

[MarN]

Dear Rebekah:

Hello and thank you for your greetings.

Yes it was really a tough process!

I had a consultation with one of my doctors. He said the same as our friends posted for me in this forum.

He said that I am a sensitive person and expect too much of myself all the time. So, I tend to put stress and pressure on myself unconsciously. Also the graduate program is competitive and strict. So, it might have negative impacts on my health condition.
He said that it is up to me to make the final decision, but I have to make sure that I have the ability to control myself not to fall into such a dangerous trap!

So, one of the important things to control the illness is to be able to manage stress in hard times.

But it is not clear to me whether biochemical effects of toxic environment and several taken medicines, radiation and bad habits have the same side effects of stress on patients or not!

I have managed an ideal healthy lifestyle for the last 5 years and I guess that was really helpful to control the condition.(The only years that relapse did not happen again!)

My doctor was astonished by the results of my positive mental state and activities. I have regular exercises per week and do yoga every day.I have worked as an artist in my studio and enjoyed it very much. I also have a very strict healthy regimen.

But things would be different if I attend a graduate engineering program, abroad. That is why I am so concerned about my health condition,then!

Wish you health and success in your life.

With regards,

[annekat]

The stress thing is really big for us Weggies! I'm not in school or anything but am a 60-year-old woman trying to get by in a home-based business. I really do let myself get too stressed sometimes! Yoga, meditation, exercise, and better diet are all things that could help. Also training oneself to avoid stressful situations that are unnecessary to one's livelihood, education, or happiness! Sometimes this means not talking at length to certain people, and not going into unnecessary detail about things! When I meditated years ago, and really worked at it, I became much better at staying on an even keel in everyday situations.

[MarN]

Thank you for the advice,dear Anne.

Yes, I have to learn to avoid stressful situations.

Wish you the best.

[Alysia]

Hi MarN.
welcome to the forum. it seems that you have a lot to teach us about living with WG.
I wonder if all "stress" conditions are the same. there are some more "toxic" then others. it is an issue. maybe for another thread...
I will be glad to read more about things that you find helping to control WG.
thanks.

[MarN]

Dear Alysia:

Hi.

Thank you for your writing.

Yes, I always suspect toxic environment, medication, medical methods of immunization, radiation, stress and also bad habits as some factors, leading to cancer and autoimmune

diseases.

I have recently learned that there are some medical tests that you can find out about the amount of minerals and vitamins in your body and see how many of these minerals have caused toxicity and how many are under the standard level. Low level of some of these minerals can cause cancer like Iodine or Bromine. Also, you can get rid of the toxicity in your body. You should ask your doctor to help you find out about these things.

Organic foods and drinks are supposed to be less toxic and can be a good choice for patients like us. So, healthy regimen is really important to avoid disorders.

Besides, regular exercise and YOGA can help patients improve their health condition and relieve tension. Ayurvedic Medicine can also be helpful.


In conclusion, I believe that, as long as we do not know which factors are really causing these disorders, we have to avoid those we suspect.

But stress management is really important in controlling these diseases, because stress can take over our minds and bodies and have harmful effects on us.

Wish you health and success in your life.

With regards,

[Jaha]

Welcome to the forum! I think that you can really help us learn more about all these things. We will all be grateful for the knowledge.

[annekat]

I think stress is stress, whatever the cause. Some people may have already developed ways of dealing with it, avoiding it, not letting themselves get too caught up in it, before getting WG or having it otherwise impact their health. Others of us may need to retrain ourselves to avoid stress, to get our priorities straight about what is really worth stressing over, etc. For me, stress causes an almost immediate increase in my symptoms. Of course there will always be stress in life. But we may need to re-evaluate what potentially stressful situations we may not need to get involved in. Or how to just roll with things that are beyond our control. These are the things I've been finding out lately.

[MarN]

Dear Jaha:

Hello and thank you for your writing.

I am not a physician and have just searched the web to see how I can help myself deal with the illness.
I need to learn a lot from all of you guys, your experience and knowledge to help myself.

Wish you the best.

[Barbara N]

Welcome, I can't add much more than has already been said here. Congratulations on getting into Grad. school. Stress seems to be a common word on this forum and something that is hard to deal with. I have changed my whole way of looking at life but it took a long time. I have had WG for a long time but was only diagnosed about 5 years ago. They didn't think of it because I had already been diagnosed with another rare disease that destroys your kidneys and heart. Having a hobby or something that you love to do really helps and YOGA in every way helps. Part of my self designed therapy is a type of yoga but done on horseback. Our saying is " relax, breathe deep and look through the ears" the look through the ears part just means to look up at the world around you and watch where you are going. If it is what you REALLY want, you can do it even if it is on a part time schedule. Suerte, Barbara

[Debbie C]

MarN..welcome to the forum. It sounds like you are doing all the right things..but even doing the right thing doesn't mean this desease won't come back and bite you in the a..! I too do yogo and try to eat the right kind of food but I get stressed out pretty easy. I don't know if it's from the preds or my living conditions but I take anxiety pills for it and it seems to help.I just figure this is what God has planned for me and it's really out of my hands. Hope everything works out well for you in your future endeavor and don't sweat the small stuff !!!!

[MarN]

Dear Barbara:

Hi.
Thank you for your advice.

Wish you everlasting health and happiness.

With love and regards,

[MarN]

Dear Debra:

Hi.
Thank you for your writing.
It is true.We can not predict the future accurately. Although tough things may happen to us, we should have positive state of mind to have the strength to carry on.
You have the power to take over your life. You should just have patience and work for your possible plans and God will guide you to your way of success and health.
I know that you are on this way and you will succeed.
Wish you the best.

[MarN]

Dear friends:

Hi.

I have recently learned that we can improve our stress management and as a whole our personality by attending classes which work in the field of Experimental Psychology , like TA: Transactional Analysis or NLP:Neuro-linguistic programming.

TA:
The Official ITAA Website (http://itaaworld.org/)

NLP:
http://www.ia-nlp.org/

It is claimed that patients can benefit from these fields to control their conditions.

With regards,

[Dirty Don]

[QUOTE=MarN;68186)It is claimed that patients can benefit from these fields to control their conditions.,[/QUOTE]

Yes, have been the TA route and read quite a bit on neuro-linguistics...all effective WITH practice & discipline...frankly, I prefer drugs...don't need to understand that I know I feel like crap...frankly, the less time I spend 'inside' my head, the better off I am...somebody pullleeeezze turn down the noise! LOL!

[MarN]

Dear Don:

Hi.

Thank you for the information.

I learned that techniques in these two fields, complete each other and can be very useful for patients.
I have a question.
How long does it take for an average person to master the techniques in these two fields? (TA and NLP)

With regards,

[Dirty Don]

Don't really know about NLP as I did not do it (though I've studied the art of controlling and manipulating language)...mastering is relative to the practicer of course. For TA, took it for 6 weeks, practiced for at least 6 months, never really got much of anywhere other than understanding much more about myself and how I react to things (like my mother! huh?!)...as for trying the techniques, I used them with a little Greek therapist (good story there!), and my ex and I used them, to no lasting avail (duh!), but I/we learned a lot about ourselves and how to present ourselves to others...works as well for manipulation of self as it does for the same of others...advertising uses Berne very well...hehe, personal bane there...anyway, I believe either alone or together can help a person in need of controlling their self in situations of consternation and frustration with life, even with WG...best to you MarN

[MarN]

So, we should attend the classes and read the textbooks, try the techniques privately and work with consultants.
I guess, it takes time to master the techniques.As you said practice, discipline, time and patience.

Thank you dear Don and wish you the best.

[drz]

I think Yoga and Tai Chi and Qigong have a better track record for health benefits and generally you can find a class nearby for one of these. The Mayo Clinic even has a web link on their site for info on Tai Chi and yoga as they are more widely known and easier to learn. They also endorse them for various health issues.

[MarN]

Dear Drz:

Thank you for the information.

Yoga, Tai Chi and Qigong are definitely powerful and effective methods and easier to practice and master.

Although TA and NLP are time consuming; for those who have the time,will, resources and energy to follow them; the knowledge seems to be wonderful to change them gradually.
I have read that these techniques can give us deep awareness to control our unconsciousness, while it has negative powerful effects on the levels of making decision, self realization and relationships. So, we can distinguish our weaknesses, correct them and change our ways of looking at life and ourselves, positively and logically.

I do not know what percent of the people who follow these techniques, succeed; but I guess for those who are eager to master them, this would be a great accomplishment in their lives.
I think that if the international educational systems teach children these techniques from the beginning, we will have a better world to live in and most of the world's problems can be solved easily!

Hope to see that day.

Wish you health and happiness.

With regards,

[Alysia]

each one with his "taste"...
I prefer psychotherapy, in psychoanalytic orientation.

[Savva]

Hey Marn!

I got wegeners in march 2012. Now in remission. I am a student and have a very stressful life as well.
The best way to deal with the stress is gym, bodybuilding, exercises at home, workout outside. I'm on 20 mg pred and 150 mg aza and dont give a f*.
After all of these ill, detrimental, vomit-provoking, weakness-causing sh*tty cyclophosphamide I had, I realized I do not wanna go through this stuff again.
My advice: if you feel like it - exercise. This is the best med, no side effects, just pure joy, healthy mental attitude, the right thing for everyone. I always feel good after exercises- full of energy, relaxed, free from problems, stress and everything. I just got out of the gym and I am writing this. I feel incredible.
Just do not start off too confident, get to know where your strength are now exactly. And eventually you will get there - to your goal, no matter how far you have set it.
Before wegeners I used to have a bit of ripped body. After achieving remission I was "squeezed", could not even do a single pull-ups, and was literally suffocating even after going upstairs. Today I go to gym regularly, feel good, even managed to get a little fit, gained some muscle and I am very grateful to God and my family I can do these things. Of course I am nowhere near I want to be, none of us are, but all this "pain" (not physical of course) it's just pain -it may last for hours, days, years... but it will go away and what you are left with is just your unfulfilled dreams? Hell no!
Considering healthy lifestyle to prevent relapses I just do what I think is right for me, I am not fanatic at anything, I just prefer to avoid stress, try not to think about people that piss me off, and believe me, there are plenty of those people I have to deal with during my study at uni. It came as a big surprise to me lately when I realized how easily I can ignore rage towards somebody - think of something else, something useful simple as that!
I am no an expert in anything, but I got a healthy habit (well I think it is healthy enough) to question all advices and get it with caution, even if it comes from docs. I think nobody can advice you anything - your body can.
And to your concern about graduate program - do not be scared to start it, you will never do it otherwise - that's my thoughts.

[MarN]

Dear Savva:

Hi.

Thank you so much for the positive energy and wonderful advice.

You are doing a great job and I wish you everlasting health and success

With regards,

[drz]

Dear Drz:

Thank you for the information.

Yoga, Tai Chi and Qigong are definitely powerful and effective methods and easier to practice and master.

Although TA and NLP are time consuming; for those who have the time,will, resources and energy to follow them; the knowledge seems to be wonderful to change them gradually.
I have read that these techniques can give us deep awareness to control our unconsciousness, while it has negative powerful effects on the levels of making decision, self realization and relationships. So, we can distinguish our weaknesses, correct them and change our ways of looking at life and ourselves, positively and logically.

I do not know what percent of the people who follow these techniques, succeed; but I guess for those who are eager to master them, this would be a great accomplishment in their lives.
I think that if the international educational systems teach children these techniques from the beginning, we will have a better world to live in and most of the world's problems can be solved easily!

Hope to see that day.

Wish you health and happiness.

With regards,

Do some research first to be sure it is what you are seeking. TA was popular in the 60's and there were several pop psychology books written at that time about it. TA was incorporated by some psychotherapists into their practices and often presented as quicker form of psychoanalysis. NLP was popular in the 70's but many of the claims made for it didn't really hold up to later research. Some of it was also incorporated into other forms of psychotherapy but the "pure" NLP" was like hypnosis and largely unregulated so it attracted many charlatans like some other alternative forms of healing. The best parts of both TA and NLP are often used by many mainstream therapists today along with other techniques they have found helpful for people.

I think a good psychotherapist who works with chronic health and rehab issues might be a better choice for most of us. Many of us have used therapy to help us handle the adjustment to our new limitations, deal with depression and anxiety GPA tends to produce, and help us handle the stress related to our illness and losses. And as pointed out earlier exercise is also a great stress reducer as long as you don't over do it and run yourself down too much. I have used various rehab therapists to ensure that my exercise was what I needed to improve my functioning without any risk of my over doing it while under their supervision. Good luck in whatever plan you pursue to try improve and maintain your health.

[MarN]

Dear Drz:

Thank you so much for the valuable advice and detailed information about TA and NLP.

Wish you the best.

With regards,