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