How does your Wegener's Affect your Family?

[renidrag]

I have had to watch my wife shovel snow out of the driveways and walks this winter. I was able to make her chocolate chip cookies. She does the laundry and tells me to sit down, sit down. She has been incredible during this process. We are at the point of laughing now, making fun of me and the symptons. Still I feel pretty useless around the house. I have worked as a plumber since i was 18, work is what I do. Now I can't, although the company I work for has put me in the office, thank God, it is still difficult knowing I won't be able to work like I used too. I share my down days with my wife and after a hug, we go on. I would be lost without her. I hope this stays with the thread,
Dale

[pberggren1]

That's beautiful Dale.

I was diagnosed in early 2003 at the age of 26. I have not been able to hold down a regular, consistent job since then. Your wife sounds awesome. How old are you now? Do you guys have any kids?

[elephant]

Dale, you wife sounds so nice and understanding. I'm sure she knows you want to help, but can't right now. You aren't useless, you made chocolate chip cookies. Your number one in my book.

[pberggren1]

Yummy!!! Chocolate Chip, my favorite!!! I wish Boston was closer so I could have a taste.

[Sangye]

That must be very difficult, Dale. I hope it will be a temporary change for you. We really identify ourselves with our work and our roles with others. It's rough when it all gets up-ended.

[Jack]

My working life sort of tapered out. I had increasingly long periods of time on sick leave and even when I was at work I was not doing very much because they did not know if I was going to be off again. I had also spent most of the previous two years working at a different plant so I did not feel well established in my new office.
It was a bit sad at the end really. After working for the company for over 30 years, I just went on long term sick leave and never returned. I can't say that I miss it that much because towards the end I could no longer rush around and stay on top of everything as I used to.

[onatreetop]

I have been lucky enough to be able to work my own hours with my own schedule. All my people know thatmy family is first and that there is a chance I might not be able to make it if I am not well. They are all understanding and helpful. Yesturaday I went to clean a friends house then was going to the Ra appointment and he had caceld all appts for the day. I didnt know so I drove to my primary doc because I knew that I had to do the fallow up from the Er visit and things wherent that improved at all really. So I am sittting in the waiting room as a walk-in and who walks in.....my friend whos house I was just at cleaning. She took one look at me and said are you ok? I told her about the RA appt. and the new rib pain and that I wanted it checked out. So she says you shouldnt have come to the house today ! I told her I was fine in the morning. It wasnt til I left her house and ate that the new pain started. So we sat and chatted together until it was our turns to go back. The doc checked my lungs/ chest throat, etc. He said everything looks fine. I asked why it hurts so bad than and why does it seem harder to braeth. Again he cant find anything. He thinks I am pinching a nerve in my neck. So he my prim agreed to see me again monday. He gave me valium and told me my pressure was ok but my pulse wasnt and that I need to take it when I take the pred to calm me down. So......I guess I get to find out what thats going to be like. But all this was leading to my friend how is like family and so understanding and helpful as I ,Ibelieve, Is making dinner for me and my family friday so we can relax together and enjoy eachothers company. That is a friend that can be better than family.
It took me two years to find a job that I could do and make my own schedule and still be home and around for the kids. i was lucky to find it and have it still. All my clients are now friends too. They havehelped me and my family through so much. I am so greatful.

[Jack]

I asked why it hurts so bad than and why does it seem harder to braeth.

Sounds like my symptoms before Christmas. Turned out to be pulmonary embolism and pluracy, but it only showed up on a scan. Four nights in hospital and then only allowed out on a home care program.

[elephant]

You are right Jack! That is what I was thinking. Onatreetop, get this checked out.
I'm going to Nag, Nag and Nag some more.

[onatreetop]

Thats why I went to te ER. I thought about going to the prim. doc and made an appointment then called the RA and they said go to the ER now!! So off I went. I saw the prim doc yesturday and showed him where the pain was in my back and he said pinched never in my neck. Gave me valum and said you need to relax you are all tince. Funny I thought. i actually laughed out loud. I am keeping an eye on it and it is better today but we will see how the day goes. That you all again for being a great sounding board!!!!!