Another new (but similar) story

[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