Another new (but similar) story

[Pmarsh]

Hello.

I was diagnosed with WG at the end of October, 2010. My story is pretty similar to many other. Chronic sinus issues, leading to other symptoms (joint pain, rash, coughing up blood - on my honeymoon of all times!), then a pneumonia diagnosis that didn't get better. Next thing I know I'm in the ICU with something called Wegener's. For me it mostly affected my sinuses, and then massive hemorrhaging in my lungs. I stated on the plasmaphoresis, high dose prednisone, and cytoxin treatments. Now I'm down to 7.5mg predinsone and have recently started on Imuran. I'm doing well. My latest ANCA results are near normal and all my symptoms are pretty much gone.

The reason I thought I would write in here is to share my approach. I haven't met or spoken with anyone else with WG, but read a few other stories on this forum. After I was diagnosed (and had some idea what WG was about) I decided that I was going to get better and get back to doing what I love. I'm very active. I'm a road cyclist and triathlete, and my work is often in remote mountainous environments. I didn't want to lose this lifestyle. One month after getting out of the hospital I went on my first ski tour (hiking a mountain on alpine skis). I was slow, but I did it. 3 days before my last Cytoxin infusion I climbed and skied a remote mountain in the Northwest Territories. Maybe not the smartest thing to do while on meds, but I felt good. Now it's bike season again. I'm trying to get some fitness back. It's a slow go, but I think I can get in better shape than before my diagnosis.

Many years ago I cycled across Canada (7000km) with a friend to raise money for Dyslexia (which my friend suffered from). I would consider another epic mission to raise awareness and funds for WG. It's certainly a complicated disease, and no one knows about it. My parents are GP's and they had to look it up. Perhaps this would be a good forum to spread the word about a WG fundraiser.

This is a little long-winded, but I wanted to introduce myself and share a positive story. I've learned a lot from this experience, but most of all, I've learned to appreciate good health and I plan on staying healthy.

Cheers!

[pberggren1]

Welcome fellow Cannuck.

[vdub]

Good for you! Sounds like you are doing great! Keep it up as long as you can. I think my situation is being somewhat impacted by no longer being young. I'm not ancient yet, but old enough to know what arthritis is. Stay active for as long as you can. Only 7 years ago I was running 5 miles a day. I would have trouble with that many blocks today.....

[Jack]

Yes, definitely do all you can while you can, but be careful not to overstress yourself. There is no way of predicting where Wegener's will take you over the years since it is not something that can be cured at present, but the hope is always that you can remain fit and well. I had 15 very good years when I was able to work and raise a family before things went downhill again. Unfortunately it is not necessarily a disease that responds to determination and a positive attitude, sometimes it just takes you where it wants to go.

[Chris G]

Welcome! And thanks for sharing your story. It's always nice to hear about someone who is doing well.

[Sangye]

Hi PMarsh, welcome to the group! It's amazing that you were able to recover so quickly. Count your blessings. Like Jack said, it's not just about your attitude. Many people are hit much harder with Wegs and/or complications and/or side effects of the drugs.

Maybe you can partner with Cindy, who is also doing very well physically and is also using her athletic abilities to spread awareness about Wegs. Search for "Everest" and you'll get her main thread. Her next adventure is underway and she needs help.

[marta]

Hey Pmarsh,

Welcome to this fine group of rare individuals.
I'm so picking up what you're putting down. I'm still new at this Wegener's game so I also have this hope of things getting back to normal. I bike (mountain and road) and ski (alpine, and x-country, and a few of backcountry trips), run, hike and do all the stuff that mountain life has to offer. Like you, and most people who live in my town, I'm a 'life-stylist'. I am so looking forward to getting back there. I think if it wasn't for my flare last fall (which I think got induced by the flu shot which had the H1N1 shot in it) I would be closer to where you are now. I'm working on getting there though. I've skied five times in the last week, and yesterday I spent all afternoon shreddin' it up. Bike season is coming up shortly (although it is slower coming this year) and my bikes are rearin' to go.

Brian (my hubby - who is a lot like you when it comes to physical activity) and I were talking last year about doing something epic to raise funds and awareness for WG. It was after he competed solo in the 24 Hours of Adrenaline, and we were thinking about organizing some killer bike ride to reach that goal. He just read your post to me and we started brainstorming again. So there, now you've got the bug in our heads again. Where are you from? Obviously somewhere up north. Keep in touch and we can scheme.

Here's to all of us living the life we want to live, and live it for a long time.

[drz]

It is great and inspiring to read about younger people with Wegener's who can realistically think about biking or dog sledding hundreds of miles. Us oldsters who can only think about maybe making a five block walk some day soon envy you, but we also get a great vicarious joy and satisfaction from your adventures and are cheering for you all the way. Go for it while you still can and enjoy the trip. Maybe some day, through your efforts, your recovery and life style will be the new norm for people with Wegs. We need more people like you.

[Pmarsh]

Thanks for all your positive comments. I certainly understand that this disease affects everyone differently. I'm fortunate to be diagnosed at a young age and have found good doctors to help me get better fast. I just hope I can stay healthy for a long time... and who knows what new knowledge will exist in 10-15 years.

Marta, sounds like we have similar ideas. Maybe we should brainstorm. I live in Vancouver. I will also look up Cindy and find out about her adventure.

It's nice to know there are others out there with the same condition. I know everyone will be at different stages as well. It wasn't too long ago that I was struggling to get up the stairs... only a few weeks after surfing in Hawaii. It's crazy.

Thanks!

[Geoff]

Hi Pmarsh,

Congratulations on giving Wegs a good clip round the ear. I shall follow your posts with keen interest.

Although I am much older than you (60 last Saurday) I was very fit for my age before I was diagnosed 3 years ago. I think that helped me considerably overcome my lung issues (similar to you) to the astonishment of the doctors.

All the very best of luck with your future 'Missions' and of course your new marriage!! :wink1:

[chrisTIn@]

What a wonderfull story Pmarsh!
Welcome to the forum, please keep us updated every once in a while...
Good luck, I hope you'll stay that fit. :smile1:

[kelly]

Hi Pmarsh not that it matters i am from calgary. i was diagnosed in sept 2008 i had just turned 50and i thought i was going to die i have been on meds for the whole time i put on 40lbs and proud to say i have taken all the weight. i have always been in decent shape my wife and i joined a gym and i have never felt stronger and have not been as fit as i am today i go to a spin class and im the oldest one in it i can keep up with all those kids its awesome.my specialest told me im her healthiest sick patient. sine been diagnosed and put on meds i have felt great oh i had some side effects but all the people around me say its my posititive additude is why im doing so well. i have been fortunate not to miss any work. if you do a fundraiser for wegeners i wpold love to get involved. good luck

[pberggren1]

Good to hear from you Kelly. I'm glad that you were able to shed those pounds and get back into shape.

[Sangye]

I'm glad you're doing so well, Kelly. Your progress is amazing.

I would take issue with the comment that the reason why you're doing so well is because of a positive attitude. It implies that if someone isn't doing well it's because they have a negative attitude. I think having a positive attitude is helpful, but it's not the whole story.

[delorisdoe]

I'm glad you're doing so well, Kelly. Your progress is amazing.

I would take issue with the comment that the reason why you're doing so well is because of a positive attitude. It implies that if someone isn't doing well it's because they have a negative attitude. I think having a positive attitude is helpful, but it's not the whole story.


I have to agree . i find my attitude is positive when I am doing well. The symptoms of wg less scary-dont know if this is the words i want-symptoms of wg like pain for me brang on alot of loneliness and almost depression. I woke up every morning feeling good and pain free. I would go into work so excited that i felt better. Two hours later it all returned usualy worse every time. This cycle sucked my soul right out of me. I try not to dwell on what is wrong and this is really easy to do during periods of remission. It is a different story when sick and the meds are not right. My attitude was however quite eurphoric when I was on 100mg of prednisone a day.
leigh

[marta]

Hey Kelly, welcome fellow Albertan... Your story sounds great. I just ordered a treadmill which should be in next week and I can't wait to start shedding those pred pounds, and bike season is almost upon us (aside from all the crazy snow in the last couple of weeks - ha ha) maybe a bike trip up the Icefields Parkway is in order this summer.

I think that having a positive attitude is an absolute must with this disease. I know that everyone on this site does have a positive attitude which is why after looking at other places online regarding Wegener's this is where I've landed and have decided to stay. This is a complicated and mysterious disease that even science hasn't fully figured out so anything that allows us to have a better quality of life (be it physical or psychological) is more than welcome. There are so many variables to getting to a state of relative well being; how the disease has affected us, how the drugs affect us, what kind of medical team we have, what our condition was like before getting sick, and on and on....Placebo effect is scientifically documented and the placebo threshold for people is very individual. If someone believes that their positive attitude has had a great deal to do with their current health status, I don't think that should be discounted or on the flip side seen as a comment on someone else's attitude based on their health status.

One of the things I really love about this forum is that everyone here speaks from their own experience and from the heart, without passing judgement on other members. I take what is applicable to my situation and disreagard what isn't knowing that sometime in the future it might be - knowing how WG operates. I love reading about people getting on the other side of the evilnesss of Wegs, and I can see why the feeling that having a positive attitude might have helped in some way. It gives you a sense of power knowing that there is something that you yourself might have done to help things along. It's one thing to trust the docs and pop a bunch of toxic pills, but if you think there is something that you can pull out from the depths and overcome in your own mind, then you feel like you're an active participant in your healing process, and I don't think that should be taken away from people.

I think that all of us on this site would be much worse off if we weren't who we are - amazing people full of positive, wonderful energy, ready to share our experience and pain and growth with others. So I'm very happy and thankfull for all of the positive energy on here.

[delorisdoe]

good point marta. If i could have chosen to be positive for the year pre diagnosis I would have but wg just kept shooting me down. I wanted to feel positive but the pain was overwhelming.

leigh

[marta]

I agree with you Leigh, I felt the same pre diagnosis. I'm sure most of us did. I have read some replies to the survey that have made me cry about how people were made to feel before diagnosis. What I'm talking about is post diagnosis. I was thrilled to get a diagnosis of Wegener's. It wasn't the diagnosis they gave me the first night at emerg which was secondary lung cancer. I felt I could overcome Wegener's and also watch my little girl grow up and spend more time with my amazing husband and wonderful family. I've always been a happy, smiley person, and it was funny in the hospital because the nurses and docs regularly commented on my attitude. It sure makes life a lot more fun and easy to deal with and the people in your life more likely to want to hang out with you and help when help is needed. I have found a positive attitude to be a definite benefit in my personal experience.

[delorisdoe]

I was diagnosed 10 years ago and there was no forum to help out and doctors all sounded like they were reading the same info off of the internet that I was. There was a mailing group I did belong too that i often wonder if anyone here was a part of. I was 28 and much younger than most of the others. I was alone but definitely less negative than I was for the year + prior to diagnosis. None of my friends even really know I have a disease at all. the only time it ever comes up is when they say things like "do you want more children?." or "why did you only have one child?" my personal favorite "do you think it is fair to not give your child a sibling"? If i get mad then i tell them i cant and then that leads to why. oh i guess i am off topic. but my point is wg does not get me down as much as i kinda scares the crap out of me.

[Sangye]

I do agree that a positive attitude is beneficial and has a lot to do with healing, I'm glad to see when people have it. My point was that it isn't the only thing affecting one's recovery. My friends always remark on what a good attitude I have. I'm always the one laughing the most, including about Wegs and everything I've gone through with it. I get up every day expecting to feel better, to have turned a corner at last. And yet I have had 6 years of unceasing pain, weakness and more complications than I can list. It has never let up, not for one day. So when I hear someone say how wonderful they're doing and how they've gotten their whole life back and it's all because they're so positive it pushes a button for me. I mean, Gilda Radner died of ovarian cancer. Was she just not happy enough?

I don't mean it to be personal against anyone or to keep anyone from sharing their feelings. I just feel it's fair to share mine as well. There is much more going on that determines one's outcome.

[Chris G]

Please accept that I am SO VERY happy you've achieved such a healthy status in such a short period of time. But, I too feel the need to add that I feel slighted by the notion that a positive attitude can change the course of this disease. I was diagnosed one month after you, and to this day, I continue struggling with drugs that are not working to control my WG. The cytoxan you received, while an evil drug, did its job of ceasing your wg activity rapidly. When the "heavy hitting" drugs are not the first line of attack, getting wg into remission does not come quickly or easily.

At diagnosis, I was literally elated to finally have a diagnosis! My spirits were good, even though I was experiencing a horrifying and excruciating ear infection. I was finally going to be treated, and be well!!! Of course, that's not what happened. Now, it's 5 months later, and I'm still on 20mg of pred, among other drugs. I look like hell & feel like hell much of the time. Daily life is a roller coaster of emotions. Most days I'm very positive - I tell myself this is temporary.....we'll find the right drug.........I'll lose the weight, and the fat face (which I can't stand to look at), and finally feel better. My husband recently told me that he doesn't know how I'm holding it together so well. But, the truth is, this disease is really getting me down.

So while I agree that a positive attitude is always preferable, and will certainly open doors for us in every aspect of our lives, I also know that no amount of positive attitude is going to send this disease into remission. Each of us requires the perfect cocktail of drugs for our particular situation, and skilled doctors to make it all happen.

On a positive note, I will be changing drugs AGAIN. This time to Rituxan, and I hope to be healthy in no time!!! PMA, right?

Continued good health to everyone who has achieved it before me! And I hope to join you soon!

[delorisdoe]

lol...i just started prednisone again yesterday for the first time in aprox two years and i have gone to the bathroom 7 times today just to look at my face. I am so paranoid as the first time I was on 100mg of prednisone and my face became so disfigured my customers did not recognize me. I have been forever tainted by that experience but i am using positive thought to convince me that I will not get like that on 1/4 the dose.

leigh

[delorisdoe]

. And yet I have had 6 years of unceasing pain, weakness and more complications than I can list. It has never let up, .

oh my goodness...i cant imagine going through that for that long. I had a hard time for 1.5 years pre diagnosis. 6 years is hard to imagine. Is it always as bad as it was pre diagnosis for you or are there periods of relief before a new drug stops working?

I do feel for you.

leigh

[Sangye]

Some complications have been equally bad in intensity and the impact they've had on my life. Even when there is no crisis occurring I have pretty severe fatigue and weakness. Right now-- just 11 wks after a round of rtx--I'm profoundly weak, in pain and hardly able to function. It's like the rtx didn't do anything except knock me flat for 6 wks.

[Chris G]

Some complications have been equally bad in intensity and the impact they've had on my life. Even when there is no crisis occurring I have pretty severe fatigue and weakness. Right now-- just 11 wks after a round of rtx--I'm profoundly weak, in pain and hardly able to function. It's like the rtx didn't do anything except knock me flat for 6 wks.

I'm so sorry it hasn't worked well for you this time around. I thought by now you'd be feeling some relief. Is there another plan of attack in the works for you?

[Sangye]

I don't know what we'll do since rtx is my only option. We're planning on doing another round in August and I suspect Dr Seo will just have me tough it out and hope it doesn't get worse.

At this point I have to think the 2 infusions did not work as well as the 4 infusions I had in the past. I do labs on Monday and we'll see if anything is going on, but labs are not good indicators for me.

[marta]

I was going to let sleeping dogs lie and just ignore this thread but it's been bugging me so much and I have stayed up a good chunk of the the night thinking about it so I feel I too should be able to say what I feel like Sangye.

I don't think this is a competition of who is having the most difficult time with this stupid disease. It's all realtive and if you will start playing the comparrison game, someone will always have it tougher than you. Since I joined the forum last year, four people on here have passed away from this evil disease, now they have nothing to be positive about. I don't think anyone on here has it easy. We all have to have pred and look like crap and can't stand looking at ourselves in the mirror at some time. We all have a life before wegs that was full and rich and we long to get back there. We all have to take horrible drugs that sometimes don't work. We have all had excruciating pain that makes childbirth seem like a walk in the park. We all think that maybe this time things will get better but they inevitably don't. We all have to live with the uncertainty that Wegener's brings along. It's not an easy ride. But we also all have a choice. WE chose what we compare our situation to. If you are going to start comparing, consider the fact that you have the wherewithall to create a coherent thought and that you have the physical ability to sit down at a computer and articulate that thought - that's pretty good.

I don't think that anyone on this thread completely attributed their state of health to their positive attitude. Anyone who is here is fully aware of what it really takes to achieve a state of health including the good medical team, including the drugs and all of their horrible side effects, including the physical clawing back after you get completely deconditioned from laying in a hospital bed and then being unable to move for months. We ALL know that. It's a fight. Pmarsh is working hard to get his fitness back after the cyclophosphamide and hospital stay. Kelly also talks about his treatment and the effects of it and has been working HARD to get his physical state back, he mentions his friends saying that it's his positive attitude. I find it odd how the words 'positive attitude' can get people's hackles up on here as much as religion or politics.

I take issue and feel slighted by the fact that people who show a positive attitude and are willing to share thier enthusiasm are stomped on and told to smarten up. As I mentioned in my ealier post what I loved about this forum IS the positive vibe and the nonjudgemental way that information is shared, but not in this thread. If I've offended anyone, my appologies. I will keep away from the forum for a while until I can contribute something useful and to avoid stepping on any more toes, I just hope that those two members who do indeed have a positive attitude and are the kind of posts I'm looking for for inspiration don't stop posting because their attitude is not accepted.

[Sangye]

Marta, that was a pretty harshly worded post.

[pberggren1]

I try to be positive. It is very hard sometimes, but I always try. The devil gets the best of me sometimes. Sorry for the religious comment. The last year or more it has been very hard to have a positive attitude with the bad lung infection, horrible sinus pain and headaches, hearing loss etc. The hearing loss makes me feel extremely isolated. I know for a fact that it is not me that gives me a positive attitude or mental or physical healing. Thinking like that is just absurd and flies in the face of common sense.

We all have Wegs differently. Some of us suffer more than others and some of us experience different symptoms. Some go into remission right away and go back to their normal lives and have many years of remission.

So let's not play the judge game here. We are all looking for support on here.

I sometimes feel guilty that I am now able to go for walks again when I know other people on here cannot. I truely feel for these people and pray and hope that someday they will be able to do that again. But I do know that is not the be all and end all. Physical health is great, but spiritual health is ultimately the most important.

I will not get into religion any further.

[BARON]

Hi all not been on for a long time am very interested in positive attitude there is no one stronger then Dee with a positive attitude her consultant says she is a fighter.
Every day she fights the fight against this horrid disease not everyone has the same symptoms and what drugs work for one person dos not work for anther
It would be great if it were like penicillin would work for all but it doesn't the strength and fight is different for every single person just like when i get man flue
The big thing is how many knock backs you get in a short time like Dee going blind throw cataracts in both eyes blood clots teeth dropping out and can still laugh with all this going on
I think that is dammed positive positivity is great but you also need a bit of luck and a good consultant who can make that cocktail of drugs work for you
We live the dream that one day it will happen by the way can you guess i love her to bits and one day we will win x

[DEE]

Thanks BARON.

[Sangye]

Baron, that was so sweet. You and Dee are a wonderful couple. Dee, I hope you get into remission soon, and I hope the other complications settle down, too.

[Chris G]

Marta - It was not my intent to cause trouble by posting how I was feeling - but clearly I did, and for that I sincerely apologize. I simply wanted to express MY feelings. I felt that the implication was....... that if we just had a positive attitude, that we may achieve a healthy status faster - and that stung a little. A positive attitude is always preferable, and certainly I feel empowered when I wake to see the sun shining, and find myself in a good mood. But that's not going to cure me.

Again, I apologize, but I felt the need to say what I was feeling. Let's not ever feel like we can't say what we're feeling. And, please don't stay away over this! We should all be able to just "agree to disagree" at some point.

[Sangye]

What ChrisG said. :smile1:

[marta]

Thanks ladies.
I also felt I had to speak my mind, something I promised myself I would do a year ago while laying in a hospital bed being told I'm not gonna make it.

Thanks for all the personal messages and emails as well. You guys are my extended family - I've said that on more than one occasion, and I have benefited tremendously from all of your advice and experiences.

Pmarsh and Kelly, please come back and tell us more, we need to hear every side of the Wegener's spectrum on this forum....the good, the bad and the snotty (sorry, I couldn't resist)

[pberggren1]

the good, the bad and the snotty (sorry, I couldn't resist)

Maybe we could do a movie and Clint Eastwood will direct it for us! LOL:rolleyes1:

[Geoff]

Pmarsh and Kelly, please come back and tell us more, we need to hear every side of the Wegener's spectrum on this forum

I agree totally. To a newcomer this Forum can appear cliquey with some dominant personalities with outspoken views, however one thing I have learnt during the past 3 years is the utter diversity of syptoms, treatment and individual attitudes to this disease which AFFECTS US ALL! We are all in the same boat, some of us are lying in the scuppers, too weak to move, whilst others, like Marta, are putting in a shift on the oars trying to get us somewhere (witness the Wegs Clothing and the Book to raise awareness of our condition) If it helps her by adopting and supporting a positive attitude, then so be it. What works for one doesnt necessarily do for another (you only have to look around this forum and the range of meds)

Nowhere has it been stated that a positive attitude is all one needs to overcome Wegs, but one thing for sure is that a NEGATIVE attitude will never help anyone and thats for sure.

[marta]

I 'heart' you Geoff!!!

[Psyborg]

Thanks ladies.
I also felt I had to speak my mind, something I promised myself I would do a year ago while laying in a hospital bed being told I'm not gonna make it.

Thanks for all the personal messages and emails as well. You guys are my extended family - I've said that on more than one occasion, and I have benefited tremendously from all of your advice and experiences.

Pmarsh and Kelly, please come back and tell us more, we need to hear every side of the Wegener's spectrum on this forum....the good, the bad and the snotty (sorry, I couldn't resist)

Gonna second this. We already seem, and naturally so I suppose, to lose our successes from the forum. I think, and especially for the newly diagnosed, it's a relief to know that some folks respond very well to the treatment. I'm blessed in that I seem to be falling into that category. The sucesses I read about last year kept me from getting too terrified after inially reading the horrible "Survival Rate" information on Wikipedia first :).

Also we need our warriors as well that have been fighting for a while. My heart breaks for Phil and Sangye regularly for their long fights with apparently limited successes. Because of our diversity we actually can provide so many different viewpoints.

Snotty since May of 2010 :)

[Geoff]

The sucesses I read about last year kept me from getting too terrified after inially reading the horrible "Survival Rate" information on Wikipedia first.



Quite right Bob; I will never forget the look on my Daughters face when she visited me in Hospital after 'Googling' Wegeners. There is no point in turning a blind eye to the information on the web, but this forum can provide a better balanced viewpoint, especially when it comes to patients with an improving condition, unlike everything we see and hear thru the Media where Good News is No News!!