Will things get better ?

[Carmen11]

I can't say it enough that I am already feeling like I'm NOT alone and that there people out there who do understand and this validates my worries and gives me a lot of hope. I know I'll sleep better tonight just knowing I can come here and get the comfort I need .

Thank you sooo much =-)

[me2]

Hi Carmen,
Welcome to our merry little band. You certainly have been through the ringer- and in a short time. All parts of your story are familiar to someone here and all of us can relate to most of it.

My own story is very long. But that's a good thing. hahaha Now I sound like the Martha Stewart of Wegener's.

Seriously though, I can say that many here have suffered very serious illness and gone on to recover and lead happy and healthy lives. I was sick about 36 years ago and went to the hospital. I was extremely ill and came close to checking out.
Cytoxan was the main treatment back then and after almost two years of taking it daily I achieved a drug free remission.
This remission lasted about 20 years and then I got sick again.

Everybody's story here is the same in some ways but also unique. Since I first began this journey I have seen great advances in treatment and also in the education of doctors about this disease.

The invention of the internet cannot be overstated as a plus for those of us with this illness. Before the internet I could not find information and I had no one to talk to who had the same illness as myself. I was very lucky to find the Vasculitis Foundation when the internet came along and the first person I ever talked to with Wegener's was Marilyn Samson- the founder of the Vasculitis Foundation. After that I went to several VF events and got to meet lots of WG patients and some of the top doctors in the field. What I am trying to convey is we can have as much interaction with other people who understand our condition as we want or need.

Thanks for joining us. I hope you get so much better that you are too busy to come here much- it does happen.

Which brings me to another idea. Since you are relatively new to the illness and to talking to other people here with WG don't be discouraged with the stories we tell. Most of us here have been very ill. What is more common is that people get well and don't look for a place like this. Wegener's is a very treatable illness now. The people that come here (like myself) tend to be those who have had lots of problems - don't let that scare you.

I bring this up because I remember when I first encountered other people with the illness I was shocked and scared at all the stories of things that went wrong. I thought they might happen to me. Well, each of us has a unique path with this illness. The other stories are great and valuable to hear but should not be a source of discouragement. Most people do quite well (even if they have been very ill) and this is the hope that you should keep for yourself.

[drz]

Yes they do get better and I am sure you will soon see improvement. While reading your story I was reminded of one of our friends, drz, who's story is somewhat similar to yours and he is now a great support and shows what fight and doctors can do. Hang in there.
Dale

I think that our time at diagnosis is often our low point, especially when the diagnosis has been delayed and major organs like lungs and kidneys have been attacked and our survival was uncertain. It was for me.

Recovery can be slow process and only a few get back to their state before the Wegs dog got them (a drug free remission with no residual symptoms or damage), but our new "normal life" can become very rewarding after we accept and adjust to our new limitations and learn to enjoy and appreciate the life we still have now. Almost everyone does improve substantially with proper treatment after they finally get the correct diagnosis.

[Carmen11]

I am trying to adjust to my new normal , but now that I'm being tapered from pred and starting the Cell Cept my new normal is changing again . I'm having more aches and pain due to the high long term use of pred. I have AVN in my left hip and a while back I fell in the bath tub which is when I fractured my back ( compression fractures ) . They seems to move around in different areas of my back and sometimes it feels like it's in my sternum which makes it even harder to breathe. It's keeping me from being able to exercise or rehab. I'm just scared I'll never be able to do anything remotely athletic . I played soccer almost all my life and now I can barely walk sometimes . It's very frustrating .. I kinda feel like a loser laying around and not doing much. Of course , I don't look anything like I used to , weight gain and I had to cut my hair due to the chemo . What if I'm alone the rest of my life ? Who's going to want this broken body ?

[drz]

I am trying to adjust to my new normal , but now that I'm being tapered from pred and starting the Cell Cept my new normal is changing again . I'm having more aches and pain due to the high long term use of pred. I have AVN in my left hip and a while back I fell in the bath tub which is when I fractured my back ( compression fractures ) . They seems to move around in different areas of my back and sometimes it feels like it's in my sternum which makes it even harder to breathe. It's keeping me from being able to exercise or rehab. I'm just scared I'll never be able to do anything remotely athletic . I played soccer almost all my life and now I can barely walk sometimes . It's very frustrating .. I kinda feel like a loser laying around and not doing much. Of course , I don't look anything like I used to , weight gain and I had to cut my hair due to the chemo . What if I'm alone the rest of my life ? Who's going to want this broken body ?

Wegs can have a negative impact on our body and its ability to function but this might be offset by improvements in your personality, increased patience and gratitude for life, more wisdom, better inner beauty and "soul".

I have lost a lot of physical function and gained a lot of weight but still feel over all I am a better person now with more to offer in a friendship than before my Wegs despite my high health maintenance issues.

[Dirty Don]

drz's on a roll today...the philosophy of WG...and he's right! It takes the abilities to adjust, wait, stick to it, try to stay positive, and most importantly, stay with your drug protocol. You'll get there...the hair, the weight, the 'why me', when will it be over...it's all a part of this illness. You have it, you deal with it, and your family and friends will see you in a new light, no matter how you may feel about yourself. Best to you.

[mishb]

Wow what a great bunch of people on here

Hi Carmen and welcome to the clan.

I have been so busy at work lately that I have 2 pages of threads to catch up on

I'm so sorry for not welcoming you aboard sooner, but I see that you are in safe hands.
I'm glad you found us.