Originally Posted by
Masha
Gigi,
You have already received some wonderful responses from other members. In fact, I found all of them to be substantial, truthful and helpful.
Wegeners did NOT ruin your life. Your husband has attempted to, but don’t let him. I don’t know if your marriage vows were the same as mine, but there is a part in there about IN SICKNESS AND IN HEALTH. We have no control over the actions of others, only our own.
As I see it you must deal with two issues, Wegeners and divorce. When I was born, 69 years ago, I came with no warranties or guarantees. Many people face illnesses and diseases worse than Wegeners. And as I have stated on this site in the past, it would be far worse to be the parent of someone with this disease as to be the patient. Unless your doctor has declared you to be in extreme dire straits, I implore you to look at this glass as half full. You may need to seek outside help and support on the issue of your own physical health. Fist, have a good talk with your Rheumatologist, take someone with you, ask the questions and get the facts.
Now, for the husband. Was he a true caregiver? Sometimes that job is draining. After a 28 year marriage I would say it is imperative to seek counseling. You may do this alone or as a couple. Perhaps there were other issues than the Wegeners. This is very hard for me to say, but you must also look at what role you played. I don’t know you, so I can safely say I don’t know how frightened or panicked your behavior. We all have the occasional pity party. That’s OK. Then it is time to pull ourselves up by our boot straps and give encouragement to those closest to us.
I am not speaking as someone new to this disease. I had it many years before the official diagnosis. I have also faced several very close call life threatening situations, so has my husband of 40 years. In our case we just grew closer. I say my thank you prayers all of the time. Yes, people have dropped out of my life since the diagnosis. At first I was hurt, but now I realize they were not true friends, just people I knew. Many people are afraid to acknowledge their own human frailties. Yes, occasionally people will say things that are just plain mean. Last month, on our way home from a doctor visit we stopped to get something to eat. I looked like hell, my wig was not on right (yes, thanks to Prednisone my thick brown locks are thinning white ones now) but I do have some very nice wigs, and when put on properly I feel like a million bucks.
Anyway, in walked some people we have known for 30 years. They are fully aware that our traveling has been clipped, but they continued to brag about all their trips and travels. This was interspersed with some nasty comments about my wig, with many questions about when would we be able to start living again. I never considered them friends, just people we occasionally shared some time with. No more, my husband and I both agreed that kind of behavior is beneath us or anyone we care to associate with, very unnecessary stress. On the other hand, I have some true and kind friends, not a lot but if they are really friends you will only have a few. So like someone else already said, now is the time to look to your real friends.
Allow Wegeners to make you stronger and kinder. Tune in to the tragedies in others lives. You may not be able to run to them physically but it will help you put things in perspective. If you are able to, then reach out to those going through a rough time.
Gigi, you were strong enough to post on this site. You were strong enough to reach out. Now, be strong enough for you to control your situation and no longer allow it to control you.
Masha