holiday time

[KathyB]

Wow-- this thread really hit home. Being new to WG and prednisone, I began to notice the thickness in my face about 3 weeks before my eldest son's wedding. No weight gain has ensued, but my normally defined cheekbones, smile, etc. were quickly transformed into puffy face, double chin, and thick upper back. I didn't recognize myself in the mirror. I was horrified anticipating ruining the wedding pictures. But you know what? All three of my sons said "Mom, do you realize you are HERE?" A month earlier, I could have been dead. The wedding was also a family reunion and the last trip my folks would be taking (dad has
Alzheimer's). It was important for all to understand the disease, but also to see I was staying positive (I'm the voice of optimism and hope in our family) and well cared for. I believe I succeeded! All I heard was how beautiful I looked -- I didn't feel particularly beautiful and the pics show the fat face, but it certainly beat the alternative!

My husband has been terrific. We are both educational administrators and in the public constantly. I have shunned all events I would normally attend. Mostly because of the risk of infection because of the meet/greet role I play. But I'd be lying if I didn't say it's partly because of my appearance. How can people not notice? I want my husband to be proud of me and my appearance so I wonder in the back of my mind how he really feels. While we are basically newlyweds (2 1/2 yrs) and I know he didn't sign up for this, I truly believe he loves me for me and admires the way I'm handling everything. Since I'm working from home, he doesn't see a lot of the pain and frustration of these life changes. So I work hard and being "fresh" for him in the evenings and of course, on the weekends.

Mama, only you can figure it all out. I concur with all the previous posts and hope we all help you sort it out. I can share my family wanted to know more about WG and continue to stay in touch (all live elsewhere around US) about my condition. I use emails, FB, and phone calls to update. I realize from talking with my mom (who worries!), the upbeat sound of my voice is music to her ears. That's what I hear from everyone -- you sound so good! My husband laments that perhaps some don't know how really serious this disease is (my sons, in particular), but I prefer the positive approach! So thanks for bringing up this subject -- it's been brewing in me since diagnosis! I hope your decision doesn't cause you any more stress! Follow your heart!

KB

[Al]

All three of my sons said "Mom, do you realize you are HERE?" A month earlier, I could have been dead. ...It was important for all to understand the disease, but also to see I was staying positive...I know he didn't sign up for this

Terrific post, Kathy! I could say more about the whole thing, but here I have excerpted a few things to comment on.

We are all different, of course, and I wish to respect those differences. I also wish to celebrate the individuality, including my own. I am not one to hide my disease or downplay it in any way. It seems to me that my family, my friends, and even my clients are better off knowing the truth--but the whole truth, and it is up to me to educate them. Your remaining positive is a wonderful thing, but I admit to having down days as well, and, ironically, I think it is good for people (and even therapeutic for me!) to see this side of me as well. As it happened, both my kids got married within 6 weeks of each other, bookending some of my worst days. The logistical stresses were horrible, but you know what? I was there! And I am not sorry for a moment of any of it.

No, your husband did not "sign on" to your ailment. None of us sign on. If I had been approached by a Wegener's recruiting officer, I would have none-too politely declined. But ours is not a volunteer organization. What spouses do sign on to is to be travelling companions, knowing that the terrain, and the routes through it, are unpredictable. For better or for worse, you know. My wife has been a superb "buddy", but I have to believe if the roles had been reversed, I would have done nearly as well. It is true that sometimes the road gets impossible to follow; spouses of dementia patients, for instance, can, I think, be forgiven for needing more emotional and physical help than is available. Yet, there is always a kind of commitment among travelers along the same road. And that includes those of us on this forum, I believe. Thanks for sharing your story!

Al

[Sangye]

That was a great post, Kathy. It's a very big deal to handle the outward changes the drugs cause.

I am going to take exception to your comment that your husband "didn't sign up for this." Don't marriage vows include the line "in sickness and in health?" If it were your husband who got Wegs would you love him any less?

[gurinbasra]

Hi mama - thanks for this post - as you have read, we can all relate. All I can say is that never let this stop you from doing what you love to do. I know, I know, it is so hard to look in the mirror because of the way you look - trust me I know! But, sometimes you'll be shocked that when family members see you, they only see someone struggling, they see finally what it's like for someone struggling with GPA and all the drugs you have to swallow. You decide. As for me, I attended 4 family weddings at my worst time of Pred, hating every minute of it, but I did it for them and for my family because they all encouraged me and took care of me, but I could see everyone with tears in their eyes when they'd look at me and see what I'd become. You'll get past this - just don't regret anything you do in life. You only get to do this once!

[KathyB]

Gosh -- I didn't mean to sound as though my husband would do anything but love me or accept my condition. I am sorry it came across that way. And I would accept and support him if the roles were reversed! He actually has significant chronic health issues of his own. I think my point was more knowing what he is thinking and maybe what he hasn't been able to say as yet. Kind of what I do when alone during the day.

In truth, I haven't known a love like ours before (had a sad first marriage that ended almost 20 years ago) and the power of our love has overwhelmed me! My cup runneth over! Not sure where I would be without him!

KB

[Al]

Gosh -- I didn't mean to sound as though my husband would do anything but love me or accept my condition. I am sorry it came across that way. And I would accept and support him if the roles were reversed! He actually has significant chronic health issues of his own. I think my point was more knowing what he is thinking and maybe what he hasn't been able to say as yet. Kind of what I do when alone during the day.

In truth, I haven't known a love like ours before (had a sad first marriage that ended almost 20 years ago) and the power of our love has overwhelmed me! My cup runneth over! Not sure where I would be without him!

Yes, Kathy, sometimes we don't know what to say to our spouses, and sometimes they don't know what to say to us. And when we do say something, it may turn out to come out a long way from what we intended. But isn't that the same with all relationships? Again, we didn't "sign on" to be complete understanding and understood, but only to accept, and keep on trying. I am glad you found the right guy! You reinforce what I think on a daily basis: This would be an exceedingly difficult disease to handle without the support of a family, however "family" is defined.

Al

[Dryhill]

Mama, I am happy that Thanksgiving went well for you. All to often we get trapped by how we perceive the world sees us, mind you with all the hype in magazines and TV adverts about looking young it is no wonder. I know an elderly lady who has had the misfortune to get Bells Palsey but she has found one positive aspect of it, one side of her face is wrinkled through old age the other side is all smooth more like a 20 year old face, guess which side she likes? I hope all goes well for you and your Christmas bash.

Kathy, your three sons are right. In the wedding photos is it not better to look "fat and ugly" rather than as a decomposing corpse or a jar of ashs? I am sorry to be a tad blunt but many illness's can cause us to look different. Perhaps it is a male thing, but I agree with Al's comment

"We are all different, of course, and I wish to respect those differences. I also wish to celebrate the individuality, including my own. I am not one to hide my disease or downplay it in any way."

I have given up caring what my friends and family plus my customers think of how I look and so far people just show concern for my health and well being and are glad that I am still alive and able to be with them. If there are any who do not like how I look, well tough luck this is who I am ......... at the moment.

Jim

[Dryhill]

Someone sent me a funny email attachment which sums up my views on how we look and the way people see us.

www.theinspiration.com/2011/09/carlsberg-stunt-in-cinema/

The attachment clearly is OTT, but replace the tattooed bikers with a load of us weggies and the two "normal people" as your friends, the couple who sit down really are your friends the people who walk away you don't want to know.

[Al]

Someone sent me a funny email attachment which sums up my views on how we look and the way people see us.

This is about right!

Al

[Dirty Don]

I haven't had the 'group' experience yet...at least not focused on me like that commercial...but I think sometimes I am a bit of a specimen for my friends and acquaintances. Don't get me wrong by any means, they are great friends, and I know how much their prayers and attention and help, especially for my wife, have helped me out. But, it seems, at times, that my friends spend too much time getting me to repeat the 'summer's story' again and again. I don't mind so much, it's therapeutic for me, but I do get tired of it. Wife handed me a pic this morning (she's putting together some special cards this year) of me with 3 stands of drugs and stuff dripping into a lax, tubed body spread on a hospital bed...sheesh! And that didn't start my day well either...hmmm, let's see, any more rants? mmmm, not right now, but I'll think of some after my next nap!! Y'all take care now!!