How long before you stopped being worried all the time?

[csjknits]

I was diagnosed April 2015 and since I have been home from the hospital (May) I am always worried that it's going to happen again, that I will miss symptoms and end up hospitalized in kidney failure and with bleeding lungs. Every twinge sends me running to the doctor. Thankfully every visit has ended with reassurance that I am doing well and that for the moment I don't have anything specific to worry about.

This week's worry is a rise in protein on my urinalysis. I've been at 1+ or 2+ since May, and the most recent one came back 3+. I fretted, fretted, and fretted some more. I ordered home tests to see if there are any changes. Today I finally caved in and called the doctor's office to see if that is worrisome. My very kind doctor is patient with me and told me I can call/come in whenever, but I don't want to go in every single time I feel something tiny is not right.

Do you finally get to the point where you know what the "new normal" feels like and you don't worry every day?

[MaxD]

Be assured a day WILL come when you wake up and the first thought will NOT be about this disease. It took me a year to get over the fear that something might happen, and I didn't even have kidney involvement. It's all very overwhelming, and the prednisone makes our mood swings worse. Sounds like you have a kind and approachable doctor, and if you have faith in her/him, so much the better. It's natural to feel vulnerable and anxious, let the thoughts come and go and know that you will recover. Best wishes!

[Alias]

Yes, you'll get to the point where you know what is normal for you, and your emotions will stabilize. Getting used to the idea of suddenly having to live with a chronic illness is very hard, and those first months are especially difficult. Hang in there!

[Pete]

This is going to seem odd, but I've never been worried about wegs and its impact on my life. When I was in hospital (a week) waiting to be diagnosed, I figured I was in a major teaching hospital with some of the best doc's in the country working on me. I knew they'd figure it out eventually -- and they did.

I never had the "why me?" conversation with myself either.

Early on, one of my docs gave me some great advice: Take your meds as directed and live your life as fully as you can. I've taken the advice and found it works pretty well.

Hope this helps. Be well -- soon!

[drz]

I think we all some how come to terms with having to live with a serious chronic illness. It might have been easier for me since I had years of practice managing diabetes which takes more time and attention on an on-going basis than Wegs.

Until your new normal becomes more apparent to yourself and your doctors, new symptoms are more unsettling. But after awhile you and your medical team become more accustomed to how your disease fluctuates and your body varies.

You always have to be diligent in monitoring things and responding to new symptoms or issues as they arise since Wegs can be very sneaky and unpredictable. Denial of problems can be fatal and it is better to be too cautious rather than too casual or hopeful something isn't serious.

You can quickly die from something you didn't think was real serious but if you have a good treatment team you trust you don't need to worry much if you keep them informed about any changes and follow their directions. They will have a good back up plan for what ever arises and this is usually discussed with you. Wegs is often described as a wild roller coaster ride but the ride usually gets easier for you to enjoy the good times too.

Like Pete says enjoy your life while you can. Most likely most of us will die from some complication of our medical condition but we never know when so enjoy today and everyday you get to enjoy your life.

[Alias]

I think another way to answer your concern is: you will stabilize and come to understand what your "new normal" is, and you will learn to be vigilant in a sensible way rather than filled with worry or panic.

Not all of us, certainly not me, have the level of mental health and strength that Pete evidently does. I went from robust good health to feeling like I was dying in a very short period of time, and I really had a hard time dealing with it emotionally for a while. And as someone else noted, the medications are not necessarily helpful in staying on an even keel. It sounds like you are getting good care. I hope things even out for you before long.

[Debbie C]

I was like you also in the beginning,especially before I found all the great people on this forum. Don't read to much into what you see on the internet. Listen to more of the people here, for we know what we are going through Every dr. I saw said it was just my anxiety but once I got a group of good drs and taking less pred. ( which will drive you crazy with different thoughts ) things got better and so did I. But like drz said ,only you know when things don't seem right and then you need an experienced wg dr,which I hope you have. Don't hesitate to come on here and ask questions,vent or whatever you need to do.Someone is always here to listen. Take care and TRY not to worry,it only makes things worse.

[whatthewhat]

I certainly relate to your post. Our daughter was diagnosed at age 14...I was unable to get a handle on my emotions on my own, and used counseling (which our family is big on anyway) and an anti-anxiety medication. Our daughter has had ups and downs to, in coming to terms with much about being a Weggie, including when to and when not to worry. She had a major setback last year and is very twitchy right now about symptoms and lab work results. She tries to be aware of her thoughts (discern what is helpful concern vs unproductive anxiety), keep up on her meds and labs, focus on helping others, exercise, and keep involved and active in her life. Personally I also pray, breathe mindfully, and meditate. Coming to terms in your new normal you will find what helps you "let go.". I agree some WG meds may increase anxieties, and I agree that what you're experiencing is normal, understandable, and to some degree wise. But as you keep experiencing the safety net you --now-- have, courage will find its way back too. I'm glad you posted, and I hope you keep reaching out.

[csjknits]

Thank you all for your very thoughtful responses. I was already an anxious person prior to all this, and I feel that some of that anxiety is seeping into my current status. I think it's time consider some anti-anxiety meds to get through this early phase--I was reluctant to take anything initially given the high amount of drugs I am already pumping into my system, but when the anxiety gets in the way of living life (which it is starting to) it is time to reconsider. That said, I will be vigilant about things that are different or get worse regarding how I feel physically. I do not want to miss the sneaky things referred to above.

I am definitely not dwelling on the "why me" aspect of this illness. What really gets me anxious (in addition to the immediate things) is the long-term effect of the drugs I am on. I am 41 years old, and when I read about the cancer possibilities from cyclophosphamide (which I am on now), or the skin cancer possibilities from azathioprine (which is the next step), my mind races. I can only imagine how these fears play out for parents whose much younger children are dealing with this.

I have a great support network and am lucky that I feel well enough to remain employed and to engage in almost everything I did before. It's not a huge lifestyle compromise at the moment. I have to go to bed early, but I was never a night owl. I don't think I'll be able to travel to the extent I had some day hoped to, but it's not an overall huge loss.

Thanks again for your words of wisdom. I know this too shall pass. :)

[whatthewhat]

Basically 100% of the kids I know diagnosed with WG are prone to anxiety. I find that interesting. And yes, one day at a time, my friend!!

[Pete]

One thing we need to keep in mind about disclaimers regarding side effects is that they were written by lawyers to cover the drug makers' behinds. The chances are pretty good that you either won't have any side effects or will have them minimally.

[Birdie]

I don't think I'll be able to travel to the extent I had some day hoped to

Don't rule it out. Just look at those here who've have 20 years of drug free remission.

[Pete]

I don't think I'll be able to travel to the extent I had some day hoped to, but it's not an overall huge loss.

I don't see why not. Mishb traveled to the USA from Australia earlier this year, Alysia traveled to Canada to be with Phil, and other forum members have traveled abroad as well. My wife and I are planning 3+ weeks in Europe next summer.

If you're feeling good and your disease activity is stable, go for it!!!

[Alysia]

You start to worry less once you feel comfortable enough here in the Forum, and you know that you can ask everything 24/7 and that there will always be here someone for you ♡♡♡

[annekat]

You start to worry less once you feel comfortable enough here in the Forum, and you know that you can ask everything 24/7 and that there will always be here someone for you ♡♡♡ This was very true for me. I was reading the forum before I had a diagnosis.... the window was only a few days from when a hospital doc suggested I could have WG. When I got the dx, having already read many posts and threads on the forum made a huge difference. I can't say I had no anxiety. It was scary, and I was facing it all alone in real life, so having all these insights and info from everyone on here made me feel SO much less alone, less nervous, and more able to take it all in stride. I felt the meds working like you all said they would, I followed your advice and learned from your experiences. Once I stopped lurking and started talking to you all, it was like a huge weight being lifted!

So, yes, quit worrying as soon as you can, stay with the program, pace yourself, avoid too much stress, eat healthy and exercise if you can, don't use up all your spoons in one day, and as someone said, take it one day at a time! It will get better! :biggrin1: