Newbie but Oldie

[Evie22]

Have just found this site after many years in the wilderness.
I was diagnoised in 1996 and WG made it presents in my live very fast, 2 frozen shoulders, nose bleeds, and incredible joint pain in all my joints, saw 7 Drs. who did not know what it was, , the local Chiropractor said I had a tumour on my spine, and my thyroid went overactive with 4 stone weight loss in two and half months (not my problem now!!)
I was in hospital for some tests when I started to cough up blood, four pints to be exact. My luck was in when a lung specialist saw me and knew immediately what he was looking at as he had trained in the Mayo Clinic. At that stage I was given 24 hours to live, but the massive doses of steroids and chemo. helped me into recovery, I was six weeks in hospital, and came out pretty sure I was dying, as one or two of the med.students told me so!!.
There was no information here in Ireland and I believe there was only about 15 people here with the disease. A friend who had the internet got me the phone number of Marilyn Sampson in Usa and founder of the support group there, I have to say she turned my life around and gave me hope, she had,had the disease twenty plus years and was still alive. I was on medication two years and went into full remission, and have been there ever since.
My life is good, not great but I am alive living with my four dogs and three cats, can do my garden and manage on my own. I have joint pain and get tired easily have to pace myself, stay away from germy people in flu season, but I am here.

[Alysia]

Hi Evie,
wow, 17 years of living with WG !
you are very experienced then, and can tell us a lot about surviving this illness.
I will be glad to read more from you.
how much time were/are you in remission ? what helps you get there ? what meds are you taking and for how long ?
usually newbie is the one asking questions, and here I find myself asking you... I hope it is o.k. for you... if not, ignore it... :)
anyway, welcome, "veteran" of WG, nice to meet you :thumbup:

[Alysia]

At that stage I was given 24 hours to live, but the massive doses of steroids and chemo. helped me into recovery, I was six weeks in hospital, and came out pretty sure I was dying, as one or two of the med.students told me so!!.


2 of my docs told me that 15 years ago most of the weggies didnt survive...

[Evie22]

Hi Alysia,
I have been in remission for 15 years, and am not on any medication of any kind. After speaking to Marilyn all those years ago, I developed a positive mental attuide, self hypnosis, I am a vegetarian, drink at least 2 litres of filtered water a day, take loads of vitamins. Having said all that I have had my gallbladder removed a few years ago and was in hospital for that nearly 4 weeks with the infection from it. And two years ago I had two retinal tears in my right eye and more surgery for that, so apart from some antibotics for that no medication.

[annekat]

Welcome, Evie, I am so glad you are here after all this time of having Wegs! You had a much rougher time of it than I did at the beginning, and it must have been very scary. I'm so glad you made it to where you are today, enjoying your garden and animals and functioning reasonably well. This is a really great forum, the people here are supportive, knowledgeable, and have a sense of humor! I hope to hear a lot more from you in the near future!

[pberggren1]

Marilyn is awesome. I have spoken with her as well.

[drz]

2 of my docs told me that 15 years ago most of the weggies didnt survive...

Fortunately things have improved greatly. Today they tell me that 90% survive their initial treatment which is usually when they present the most serious symptoms often due to delay in diagnosis. I think it important to keep this info in front on any new viewers along with the fact that many even with Wegs can do some truly amazing things, like bike rides, dog sled races, mountain climbing etc that seem quite extreme to most healthy people.

[mishb]

Welcome Evie.
So happy that you finally found us.

You have learnt to beat this sucky disease and I look forward to your input on the forum, to try and help others on their journey.

[chrisTIn@]

I am a vegetarian, drink at least 2 litres of filtered water a day, take loads of vitamins.

...apart from some antibotics...no medication.

Hi Evie! wonderfull to see you on this forum.Thanks a lot for your story.
I know that a non-medicated remission is exceptional, but not impossible for Wegs-patients. However, regular medical check-ups are requested. Are you still seeing a specialized Vasculitis-doctor?

I am in a non-medicated remission myself as well, but till now I have a medical check-up in a Vasculitis-clinic every four months.
You say you are a vegetarian.
Did you stop eating meat after you were diagnosed, or were you always a vegetarian?

[Evie22]

Thank you all for your warm welcome,

I attend the hospital once a year , and have all my blood tests done a month before that so the results are in. My consultant immunologist is not very helpful, when my B12 was low and she wanted to start injections, I had to tell her about "sublingual B-12 tablets", after taking them for a few weeks brought it back to normal, she has now recommended them to some of her patients who are afraid of needles, but she does not believe in vegetarian diet, and as I am borderline anemic, has been telling me for at least four years that I probably have a tumor somewhere!!!, so with support like this I make a big effort to live a healthy lifestyle..
So that means, no air freshners in the house, I use a lot of vinegar and bread soda to clean around the house, no wine, as the preservatives make me so sick, a lot of foods that are overly processed also make me sick, a bit of trial and error and I can be a little slow in learning sometimes if it involves chocolate and other good things.

But Mental attitude is so important, when I was on the chemo infusions, I was visualising it to be full of warriors coming in to kill off the overacting cells and bringing peace to my body, so I was never sick while on it and I did not listen to negative feedback from Drs. after the first year, as only one of my consultants knew what he was taking about, and I left him after he wanted to put me permanently on antibotics for the rest of my life. Never be rushed into a decision, do your research, talk to as many Drs, as you need to come to the right treatment for you,as it is your body and you have to live with the results
. Having said that I got the right treatment at the time and I had a great kidney consultant,who worked with me to come off the medication as saftly as possible, and the best thing I can say about him is that he listened to me and heard what I said without imposing his opinion on me. He has since retired and I have lost a great support.

[Jen in Phoenix]

You say you are a vegetarian.
Did you stop eating meat after you were diagnosed, or were you always a vegetarian?

Hi Christin: Just adding my 2 cents as a veggie Weggie! I was diagnosed with WG in 2005 and have been a lacto-ovo vegetarian since 1983 (yes - 30 yrs). Along with that I was always very active - regionally ranked swimmer in the US, nationally ranked overseas, competitive sailing, power-lifting, triathlons (I was always a sucky runner though! LOL). Alas, Wegener's seems to be indifferent to "healthy, active lifestyles". And while I believe that a fruits, veggies and legumes are essential to health, I'm not sure a purely vegetarian diet is always the right choice for everyone - or even myself at this point. After 30 yrs, I am adding fish back into my diet to see if that makes any difference in how I feel. I have just started this a month ago, and I eat fish once every 2-3 days. I, too, drink at least a gallon of water a day - granted I do live in a desert! I do grow a lot of my own fruits and veggies organically in my garden and buy from local farms that I know are organic too. I also have several pet chickens for organic eggs. I am pondering raising my own talapia in a tank as a friend of mine does.

Ironically enough, I was actually on the elliptical machine at the gym in my local Community College when I had one of the first indications that something more than mere "fatigue and allergies" was wrong with me. Something in my right eyeball "popped" and I started getting low-grade headaches from that point forward. WG has attacked my vision most aggressively and my disability case was won mostly due to my lack of vision (legally blind in one eye, low vision in the other).

For myself, my motto has been "try it and see if it makes you feel better. If it does, keep doing it. If not, try something else." When I had my initial flare (and three close calls with death), all I wanted to eat was eggs, very bitter, unsweetened dark chocolate and napa cabbage - go figure.

My biggest wish for all of us is a strong support system and the ability to participate in new adventures despite the many challenges WG throws at us.

Live long and prosper!
Jen in Phoenix

[annekat]

Jen, it looks like you also have just recently joined the forum, so, welcome! Reading your perspective on things is interesting and enjoyable, and I hope we will hear lots more!

[Jen in Phoenix]

annekat - thank you for the welcome! I think I was a member of this (or a similar) forum back in 2005/2006 but then drifted away (who can remember??? I'm sure none of you have ever experienced lack of clarity in memory - LOL!) Anyway, I am exceptionally happy that this forum exists - WG can be a lonely illness to have.

I am currently going through my first flare (after the initial disease manifestation in 2005) which started in Oct of 2011. I hope to be off cytoxin and pred SOON and be a little more clear-headed.

Jen in Phoenix

[chrisTIn@]

For myself, my motto has been "try it and see if it makes you feel better. If it does, keep doing it. If not, try something else."


Hello Jen from Phoenix!
Good to see you found the road back to this wonderfull support-group.
Thanks a lot for your input.

I totally agree with your motto. In fact, though I'm not a total vegetarian, I was never very fond of meat, and nowadays I also don't eat a lot of it.
I'm very sorry to hear that you lost the vision in one eye because of WG/GPA.

I hope you'll soon be off cytoxin and pred, and have a long and solid remission again.
Btw...dark, bitter chocolat seems te be very healthy! :smile1:

Christine.

[Jen in Phoenix]

Thanks Christine! I'm like you - I was never very partial to meat - which made being a vegetarian very easy.

As for bitter dark chocolate - it does seem to be quite healthy and contain several key nutrients. I definitely did something for my funky mood when I was on the super high doses of meds the first time around.