just need to say...

[marylz]

I just needed to say I am a little bummed today. My daughter is home from grad school on vacation and we were at the grocery store when we saw a young woman with 2 small babies and I said "there's you in a few years."" and she replied "no way--at least 8 or 10 years" and I thought to myself that I probably won't meet my grandkids with this lovely disease. My son is a high school senior and I may not see him through college. I do not usually think this way, but today I did and it made me sad. I know that this disease can go into remission and I plan to follow everything I'm told to do, but sometimes you don't really have control and I also don't want to cause my family pain watching me struggle with the complications of my disease. I'm not saying that I want to end my life, because I don't but I wish things are different and therefore am sad.

[carriej22]

We all have days where it plain sucks. You are newly diagnosed; you've got a road ahead of you but hey - if you are able to go out to the grocery store you are in WAY better shape than I was when I was first diagnosed.. I'm only 23; and I feel as my life has been stolen from me before I even got to really begin it. However I am going to do the best I can with what I have been given.

It does get better - I didn't think it would either; and I felt horrible and contemplated just giving up. I was diagnosed in May and I am just starting to get some normalcy back; and it's slow going. You'll get there

[Dirty Don]

Glad you said it Mary...we all have/do feel the same from time to time...this is not fair to anyone...you will be more focused soon & will continue to do what's right for you and yours in the here and now...now force a smile for everyone...you know how...

[pberggren1]

Mary, the good news is that most Weggies live well into their 70's. I even know a few in their 80's. Try not to get discouraged. Easier said than done though.

[DEE]

My consultant had a lady who lived up to 93yrs and had WG for 20 + of them.

[annekat]

Mary, your sense of discouragement is understandable. But do try not to think that way; you will not be deluding yourself to think with proper treatment you will live a normal lifespan, see your grandchildren, and experience them in all their glory. Some women with WG have gone on to have babies themselves. There are people on here who have had WG for many years and keep plugging along.... some get better and go into a lasting remission, some go into a somewhat less solid remission and are subject to flares, and some have a pretty hard time, period. But it seems to me that those who get stabilized and maintain a life of relative normalcy are in the majority, which will probably include you!

Carrie, well said, and that's a great new photo of you for your avatar! (Even if it's not new, it's great.) I don't know if it's better to be younger or older with this disease. Younger, there is more hope of a cure or major advances in your lifetime. Older, well, we were getting older and slowing down anyway, but still have the potential to enjoy life.... Very hard to say.

[Marci]

Marytz just keep coming here to talk things out. Anytime you need a virtual hug this is the place. Dee thanks for posting about the 93 year old woman.