holiday time

[mama2005]

I have been having the biggest battle with my husband I was really sick last year so I did not attend thanksgivng or Chirstmas. Which means more than half of my family has not seen me for about two years because they all drive in or fly home for chirstmas. I do not want to attend the family gatherings this year not because I am sick but because no body has really seen me. I have a sever saddle nose (no bridge at all and tip of the nose turned up kinda looks like a pigs nose) and constant eye watering so I fear the questions and I just don't want to have people looking at me and my husband can not graps that I don't want my family to see me like this. We have keep my family updated on the disease by emails and I have not had a piicture taken in over a year. He keeps telling me I have to go and just put my feelings aside. I know he loves me and that he has had to deal with alot of changes in our lives with this disease but I just wish I could explian how much it hurts me to see others look at me and see the expressions on their face when they see me.

[Dirty Don]

mama, one of the things I've done, quietly and alone, is look into the mirror at ME as I am now. Question: can I deal with the new WG me? It seems, in my opinion, that I have to do that in order to get better or at least get an upper hand on WG. So, my reaction to 'me' is everyone else needs to accept who I am now, in the mirror or at the dinner table...way it is now...no offenses, no detriments. I limp some, I hurt some, I laugh some, I've cried some too...but, ultimately, my family is glad I'm fighting back, quick to react to who I think I am and why I'm doing what I do now...that is, battle WG!! Best of luck to you...YOU are who's important! Always remember that!

[Titus3:2]

mama2005,I have read your thread over and over,and can relate to it very well.Holiday time or any event can be very hard.If you are like a lot of us with saddle nose you dread the camera.Balancing what you want, and your loved ones want is not easy.They don't know how you feel,but sometimes you need to give into their wishes.Only you know what you can tolerate socially.Don't let WG push you away from the people that care about you.

[Al]

I have been having the biggest battle with my husband I was really sick last year so I did not attend thanksgivng or Chirstmas. Which means more than half of my family has not seen me for about two years because they all drive in or fly home for chirstmas. I do not want to attend the family gatherings this year not because I am sick but because no body has really seen me. I have a sever saddle nose (no bridge at all and tip of the nose turned up kinda looks like a pigs nose) and constant eye watering so I fear the questions and I just don't want to have people looking at me and my husband can not graps that I don't want my family to see me like this. We have keep my family updated on the disease by emails and I have not had a piicture taken in over a year. He keeps telling me I have to go and just put my feelings aside. I know he loves me and that he has had to deal with alot of changes in our lives with this disease but I just wish I could explian how much it hurts me to see others look at me and see the expressions on their face when they see me.

This is a tough issue. I have given it a lot of thought, and I have asked my wife, who has seen me through many ups and downs, comment on this. I will post her notes later.

I believe that Don's observations are very wise, and need no seconding from me. Yet I feel that I should comment on a couple of things. It is a fact that stress management is crucial in dealing with Wegener's and other immune system diseases. It is also true that we all live in fear of infections, so being wary of large, rowdy crowds comes with the territory. But it is also true that stress management by withdrawal has its drawbacks, including a therapeutic downside. I cannot give you direct medical advice, of course, but I will tell you that, in short, humans are not built to live in isolation. Perhaps your husband is phrasing this poorly (yes, it is really difficult to explain to even the most sensitive loved one how you feel), but I believe he senses the dangers of detachment, and is attempting to do the most loving thing possible, to get you out of what he sees to be negative spiral, to make life fun again. Your point is that this would not be fun (and would be stressful) for you. What would be fun, may I ask?

Loved ones are called that because they love you. Unless you have a totally dysfunctional family (in which case your husband would be right with you on avoiding them, I'm sure), they are with you rather than against you. They may not understand what you are going through, but they want to be, and can be, educated. Who better than you to be the teacher? I am a sick old man, bald, and rather ugly. But there is this compensation: Because of my disease I know a bunch of stuff, important stuff, that my loved ones have never experienced. But they need to know about it. They need to know that having certain physical problems or dietary issues, for example, does not make me a freak. They also need to realize that my fear of infections is no reason to shun me. Neither am I contagious. I know that they will accept me and love me even if they do not understand me and do not know the appropriate way to express that love. It is not important that I be a young, dashing stud; a wizened old geezer will do nicely, so long as I am a full participant, as long as I bring something to the party.

You have to make your own decisions, of course. But here is one possible way out. Perhaps this is not a go or no-go matter. I have never met your husband, of course, but I believe that he really is thinking of the best for you, and would love a dialog about how to make that work. You might work on ways, with him, not to stay home and sulk, but, rather, to make any social interactions, dinners, or whatever, less stressful for you. Maybe you can develop certain cues between you as to when enough family time is too much. Or, perhaps you can engage him as your defender, if someone makes an insensitive remark, he can do the response, saving you the bother and the stress. Are the relatives a drive in a different city? I crave the drivesI have with my wife. On the road, we can just enjoy each other's company and talk for the whole ride. I believe this kind of compromise is the best approach.

Finally, we are here for you. We all need a network who will buoy us up when we sink, and prod us when we want to lie down. We need to be both sounding boards and nags for each other. Yes, I am telling you honestly how I see things. I would ask you to do the same for me when I am sliding downward. This is, I think, love in action. My best to you, and please let us know how it works out!

Al

[Dryhill]

Mama the only thing I can add to the advice that has already been given is if you do not meet up with your family then WG has won. Pre-WG would you normally be looking forward to a family reunion? If your answer is yes then it is quite likely that over the holiday season you are likely to be upset from not seeing them.

[mama2005]

Thank you all for the advise. I don't isolate myself Al from the general public just from my family. I have always been seen as the strong person. I never show emotions and I fear the questions because I don't let my family and friends (other than you all) know that I am scared to think of what may come in the future with this disease. I don't talk to anyone about the disease because they won't be able to understand and when I first got diagnosised people who knew about the disease would come and tell me how sorry they were that it wasn't curable and would treat me as I was dying, so I gave up explaining it and just rather keep to myself. I have not prepared my family for the physical changes (saddle nose and hearing aids) so I am guessing it will be a big shock to them and my nose is a major self issue. I have not directly looked in the mirror over six months because I am that scared of what it has done to me and I know that it is fixable but to face my family and to explain to them what this disease has done to me and not become emotional is almost impossible. I know that my family will always love me but I am not sure what I am going to do yet. I will keep you all updated and agian thank you for your wisdom.

[Sangye]

Hugs to you, mama2005. I can understand what you're going through. I don't have a saddle nose, but this huge weight gain sure does make me feel the same way.

[Dirty Don]

The best to you mama, well stated Al...being honest and open with WG is something I never thought of in having a disease like this...interesting side effect! The best to all of us!

[Al]

I don't let my family and friends (other than you all) know that I am scared to think of what may come in the future with this disease. I don't talk to anyone about the disease because they won't be able to understand....

Mama. I appreciate what you are saying, and I do understand your concerns. But, still by way of being as honest as possible, I stand by my earlier comments. Regardless of how competent your family is to understand you, I truly believe they would like to. Are they really that uneducatable? I think that, unless they are, they need to be given a chance. But here is the other thing. We on this forum have never seen you, so our concernis for the real you, not the surface you. Isn't it possible that others, who know you even better, have the same concern?

Oh, and one more thing: How about your kids? You are the strong one, yes? Isn't being strong compatible with blasting your way past the asinine questions of Uncle Bob of the Booze Breath and Aunt Sally whose hesitant interjections you could never figure out? Not letting the small things dominate is, I think, very much of being a strong model for one's children!

Al

[jola57]

Mama, I can totaly relate. For more than 2 years I did not attend any family, or my husbands proffesional evants. I did not take pictures and avoided looking in the mirror, because I did not recognize myself. As for going to the holiday parties, well as hard as its to say, my husband was ashamed of my looks too. Oh don't get me wrong he understood that I couldn't help the weight gain, the moon face, the blotches, smelly mouth, red watery eyes, bruised body etc... He was helpful at home and tried his best to massage my dropped foot back to life. But for bopth of us, my appearance was a nightmare. I still worked because my office saw the pregression of the disease and the havoc it wrought on my body and grew up with it so to speak. If you go to my profile, you can see the difference between then and now. The worst is the picture with the cheetah. Anywho, I began getting reaquainted with my new self by finally taking many pictures of myself from every angle, getting gussied up and taking a snap shot, putting on a neglige and taking a snap, I kept looking and looking getting used to my body. The final test came when I visited my family in Poland, and I had to do that because my two sons are my whole world and the youngest was in Poland studing medicine. Visiting with family who remember me as a pretty slim and stylish woman and were shocked and pittied me and for a moment I felt bad. But soon I remembered what they were looking at from the pictures that i took and it started not to matter.
Mama it is not going to be easy, I still get out my slim pretty pictures and compare to now. But honestly it is going to get easier and easier. I am going to the Hospital Christmas party for the first time since I got sick 5 yers ago in 3 weeks. Wish me luck as I will wish you to come to terms with the new you. Try the picture therapy, I do so hope it helps you as it helped me.

By the way, on my 25 wedding anniversary 2 years ago we took a picture with our best friends as we celebrated together, I hated the way I looked so much that I tried clumsily to narrow my face with Photoshop. Its on my Facebook (jolanta teszka) take a look if you like, I keep it as a reminder of how hurtful it is to feel so bad about yourself. I still feel bad about my body, but I am swimming and slowly shedding the weight.

Mama, the final word is yours, if you are not ready - do not go. Your feelings are what matter, they (your husband and family) will get over not seeing you, you may alway bear the scar af feeling "ugly" . I speak plainly and truthfully and it is up to you to get used to your new body and to start accepting, respecting and loving yourself for who you are and not be bothered with how you look.

Good luck love

[mishb]

Mama2005,

I am so sorry that you feel this way, I think your family will understand and if they see your changes at least they wont be talking amongst themselves about how you don't look sick.
We all know how we hate those words. I know that sentence about doesn't sound very good, but I come from a very large family and I know that is how they would think. Some of my brothers even like to tease me a little about it, but I know that it is all in fun and they really are not bothered one way or the other on how I look. They all care for and love you.

My thoughts for you are very simple.....and I really think you should go.
You said that you keep them updated via email, so the next email just let them know about the nose and the other things and take a picture, like Jolanta said, and send it to them in the email and tell them that this is the new you and you are looking forward to seeing them at Christmas time. (fore warn them, so to speak).
I think you will be fine and will have a wonderful time. If not, pop on over to Australia and we will show you a good time (and you can smack me for telling you to go). :flapper:

Best of luck with your decision

[mama2005]

Thank you all and al thank you being honest it helps. You all have given me a lot to think about and yes I have not came to terms with my nose but I know it will get easier. I am hoping by febuary or March I will have reconstruction surgery to help me back to myself. I think about my kids and what they miss but then I also remeber my daughter asking me not to come t her school anymore because the kids in her class made fun of my nose and again how to explain to a youngster that can't understand so I feel sooo bad that my baby is hurt by what others think about me. Thanks guys and I know it gets easier and that I will make the best decision its just going to be a hard decision. Again thank you all for hearing me whine and hearing my worries.

[jola57]

Mama, a big hug to you and your little ones. This is so tough on the children, acceptance is such a big thing in school. I hope you keep up your spirits and "it too shall pass" :hug1:

[delorisdoe]

Thank you all for the advise. I don't isolate myself Al from the general public just from my family. I have always been seen as the strong person. I never show emotions and I fear the questions because I don't let my family and friends (other than you all) know that I am scared to think of what may come in the future with this disease. I don't talk to anyone about the disease because they won't be able to understand and when I first got diagnosised people who knew about the disease would come and tell me how sorry they were that it wasn't curable and would treat me as I was dying, so I gave up explaining it and just rather keep to myself. I have not prepared my family for the physical changes (saddle nose and hearing aids) so I am guessing it will be a big shock to them and my nose is a major self issue. I have not directly looked in the mirror over six months because I am that scared of what it has done to me and I know that it is fixable but to face my family and to explain to them what this disease has done to me and not become emotional is almost impossible. I know that my family will always love me but I am not sure what I am going to do yet. I will keep you all updated and agian thank you for your wisdom.


um...did I write this. This is how i have dealt with wegs for the last ten years. Feel free to pm me anytime if you want to disscuss the ups and downs of dealing this way.

[Kami]

Hi Mama! I love your name, your kids must mean the world to you! I know how you feel, I have the most wonderful daughter in the world. Before I was diagnosed my daughter came home from school one day and said "Mom my friends think you're a pretty mom, you don't look like an old mother." That was soooo sweet! Not too long after that I got very sick and did not look anything like I did then.

It was very very hard because my daughter is very active and I had to go to Prom, she was a Home Coming Candidate, and a million other things. She won Miss Pine City Princess and was in countless parades and community events. All the other families and having pictures taken to remember these wonderful events forever. I was and still am sick about it everytime I think about it. I want beautful pictures to display in my home of my daughters priceless experieinces that we will never get to re-live.

The fact is that we don't have these pictures, never will. BUT I do have a few pictures, I dont look like that pretty momma, I don't even recognize myself. One of the other Princesses moms said to me, "Kami you are here that is what is what is important and you are still beautiful! You may not think so but everyone else does." I had no hair, 50 pounds heavier, could hardly walk. I think she was lying to me. :)

The fact is that I am still her mom and I love her and she loves me a lot and we are lucky to have each other. I am so very thankful that I was alive to experience all these things and to be there for her and with her..

It was hard but I am glad that I have a couple of photos from those events of her and I because nothing had changed between us and we experienced those things together. It is almost 2 years since I was diagnosed and I am starting to look a little more like I used to, way better than I did when we took those pictures. Now I look back at those pictures almost 2 years later and say "WOW AM I LUKCY TO BE HERE, LOOK WHERE I"VE COME FROM!" :) I do know if I'll ever get back to normal but if I do I am going to have a professional picture done of the two us to keep! :)

I know this isn't the question that you asked but maybe it helped a little. I don't think any of us likes how WG has changed us on the outside but remember we are still the same great people on the inside and your family loves you! I doubt that you would think less of someone in your family if the situation were reversed. Whatever decision you make will be the best for you and your family. Good luck with your decision! Love and prayers, Kami

[Dumpy]

Hello Mama ! I began with symptoms of WG the first of 07 and wasn't diagnoised until Jan. 08 and as all of the Doctors visits and treatments began I started to call and talk with my mother 2 and 3 times a week. We had always talked and visted when we could but it just seemed to be more important when all of this began. As it turned out my Mom was diagnoised with stage 4 lung cancer in April of 2010 and she passed away on June 3, 2010. It really means a lot to me now that we had a really special time together before she passed and this crazy ugly disease is what brought us together sooner than her getting sick. I wouldn't take anything for the extra time that we gained before she passed and I made sure that every time that I talked with her that she knew that I Loved her.
I'm just trying to say not to let the WG stop you from seeing your family and have regrets later that you didn't get to give that hug to are tell one of them that you loved them.

[mama2005]

ok all I have decided to suck it up ad go to the gatherings. I have took advise from you guys and I hope all will go well. I sent out a email informing my family that with the wg i now have saddle nose deformity along with it I took a picture which was the hardest thing for me to do. I have spent the last hour trying to tell myself it will be ok. anyway i got gutsy enough and finally sent it out to family members and i also posted the pic in my album. I know I look bad but I am thinking that I have to get use to it before It will get better. thanks all for your support.

[Sangye]

Mama, I'm proud of you. That took a lot of courage! :hug3:

If a family member had the saddle nose and not you, how would you feel about them?

[LisaMarie]

Ok is it bad of me to want to fore go the big christmas tree and just put a little one out...It will most likely be just me and my nine yrs old son to enjoy it and it just does not feel like christmas with everything going one....ughh I feel like scrooge:please respond:

[Chris G]

Yay! I'm proud of you too Mama!

[mama2005]

Ok is it bad of me to want to fore go the big christmas tree and just put a little one out...It will most likely be just me and my nine yrs old son to enjoy it and it just does not feel like christmas with everything going one....ughh I feel like scrooge:please respond:

I am only putting up a very very small tree this year because nobody is coming to my house and my husband and kids will be leaving on chirstmas day for arizona so I am not taking the energy to put up all the decorations.

[jola57]

Way to go mama2005, enjoy.

[drz]

I am only putting up a very very small tree this year because nobody is coming to my house and my husband and kids will be leaving on chirstmas day for arizona so I am not taking the energy to put up all the decorations.

You could decorate to the hilt and invite neighbors an and friends in for a big Christmas party. Then you wouldn't feel the effort was wasted.

[Dirty Don]

Mama, very brave and astute of you...people have to accept you, and you do also...great decision!

LisaMarie, do what makes YOU feel better at the moment, cuz right now that's all we've got...the future with this disease is a guessing game, so you set yourself up as best as you can to control it and your current lifestyle! Don't worry about others so much...their perceptions are their problems...period...we have plenty of our own with this disease...LOL...take care, be patient and persistent!

[elephant]

Mama, Dido to what everyone else said. Your stronger than you think.

[Dryhill]

I am only putting up a very very small tree this year because nobody is coming to my house and my husband and kids will be leaving on chirstmas day for arizona so I am not taking the energy to put up all the decorations.

Well done mama, that took a lot of guts. I like the idea of putting a photo in your album, in a few years time you will be able to look back and remember these tough dark days and be thankful that they have passed.

As to a christmas tree I have decided to put one up for the first time in about 8 years. I am a taxi driver and pre-wegs I used to work 12 - 15 hours shifts at at night. One good thing about this terrible disease is that I have come to my senses and am now working less hours and mostly day time. So this year I will be home to enough to enjoy some Christmas decorations.

[Kami]

I am also so proud of you Mama! I think you will be happy with your decision.

As for the tree, do what is easiest for you. Christmas will be wonderful no matter what. I came home from the hospital the day before Christmas after getting diagnosed and our tree was dead because no one had watered it for over 3 weeks and I couldn't cook so we had to have food from a restraurant. Thankfully my mom had wrapped the few presents I did get purchased before I ended up in the hospital so my daughter had something to open but it was still great to be alive, and home, and having Christmas! Now I feel better but we have scaled things back, it's too hard for me to keep up with all the projects!!

[mama2005]

I made it throught thanksgiving dinner. I was not asked many questions the family really just talked about other issues so I was relieved and think sending out the pic and the kinda heads up helped. thanks all.

[Al]

I made it throught thanksgiving dinner. I was not asked many questions the family really just talked about other issues so I was relieved and think sending out the pic and the kinda heads up helped. thanks all.

Well played! Now that is over, and time to move forward, yes...?

Al

[mama2005]

yup moving forward chirstmas next that only brings 86 relatives (thanksgiving was 52) into a very small space so no worries there they will be talking about the house getting to small for such a large family. After that is the surgery to repair my nose yeah...

[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/ (http://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!!

[Dirty Don]

NO, she's not using that pic as a Xmas card...jeez!!!

[Al]

NO, she's not using that pic as a Xmas card...jeez!!!

Yeah Don--she's using the shot to remind you of what a great time you had in the hospital! I've got quite an album myself....

Al

[Dirty Don]

LOL, just poppin in before the nap!! Yeah, sometimes it's difficult for me to tell, although it's becoming better, the difference between what I think I remember and what really happened, as I am dependent on what my wife remembers and some close friends who took me to hospital and visited at opportune times. Still piecing the experience together...jeez...don't know why, it's a moot point now...I got it, I gotta deal with it! LOL

[Dryhill]

Don, re your comment "just poppin in before the nap!!" I need your help in getting the Olympic Committee to accept sleeping as a new sport in next years games in London. I think we weggies have got a really good chance of winning a medal or two - I am certain of a silver! :cool1:

Jim

[Dirty Don]

Jim, got the letters drafted, just gotta get your signature!! Sleep...for me, it's a good thing, as I've never been a good sleeper...that's what WG has done for me! Ha! We'd win in a landslide, but can Wegs register as a country???? LOL

[Dryhill]

Don, the country bit could be a problem, we will just have to set up our own country. But what would we call it seeing that our wonderful disease has had a name change? :huh:

[Dirty Don]

Wegland, Wegville, Wegtropolis, Wegobania......................................... .................................................. .............

[Dryhill]

I think the last one, Wegobania, has a certain ring to it. Next stop the olympics!!!!

[Lightwarrior]

Wegland, Wegville, Wegtropolis, Wegobania......................................... .................................................. .............

The capital of Wegobania could be Predtropolis

[Al]

The capital of Wegobania could be Predtropolis

Very good--I like this!

[Dirty Don]

"Hi there, I'm from Predtropolis, Wegobania...I'm hopefully REMing in the 'sleepathon'...where should I put my pillow?"

[Dryhill]

Of course there iare two big problems:-

1. As a country don't we have to have a flag? If so any ideas for its design?

2. At the opening ceremony someone has to walk carrying the flag, are any of us going to stay awake long enough? I am tempted to book one of Al's rocking chairs to watch the event. :flapper:

[Dirty Don]

OK, let's postpone the opening ceremony...too much on our plates already...but, a flag...how about a Weg flag contest? Open up a 'window' for contributions of flag samples, then narrow down to say 5 (that's suggesting we may have even more than that...mmmm, doubting now!), then implement a 'voting' process by which we become a COUNTRY of Wegs, weggies, WGs, do we have WegHeads yet??? I'm thinking this could be bigger than all of us!!!!

[Dryhill]

OK, let's postpone the opening ceremony...too much on our plates already...but, a flag...how about a Weg flag contest? Open up a 'window' for contributions of flag samples, then narrow down to say 5 (that's suggesting we may have even more than that...mmmm, doubting now!), then implement a 'voting' process by which we become a COUNTRY of Wegs, weggies, WGs, do we have WegHeads yet??? I'm thinking this could be bigger than all of us!!!!

Hmmmm I thiink I had better sleep on it, it is going to take a lot of energy just thinking about it.

[Dirty Don]

it is going to take a lot of energy just thinking about it.

Energy? Hmmm, you're right, thinking even is taxing anymore...sighs...

[Lightwarrior]

Energy? Hmmm, you're right, thinking even is taxing anymore...sighs...

We already have a battle cry, supplied by Marta "Weggies Unite" how about a national food???? I'm thinking something high in carbs??

[pberggren1]

We already have a battle cry, supplied by Marta "Weggies Unite" how about a national food???? I'm thinking something high in carbs??

Mexicana!!!!!!