another kind of pain...

[Alysia]

We are writing here about the pains in the body, and I want to write about the pain of my soul...
Today a very good friend came to visit me. we haven’t met couple of months, because she was too busy and I was too tired… I took off my glasses and showed her my nose (which became more saddle in the past months). I saw tears in her eyes. I put my glasses on and changed the subject.
I was too vulnerable to allow myself to be with her tears for me, to be with my tears for myself… it was too much pain at that moment… it is too much pain… I don’t have enough words to express it (not even in my language). But Im writing it here because I know you can understand what I mean.
Thank you all for being here.

[annekat]

Alysia,

Since I have a saddle nose, too, and wear glasses, I can certainly relate to how you felt with your friend. I have shown mine to very few people, though a few have been able to detect a difference without being shown. Most who see it are a little alarmed but seem to take it in stride. At least it gives them a clue that I really do have a serious, life-changing disease. But in the end, it is only an external sign of much more complicated and serious issues that are going on in our bodies. I don't like it, but I comfort myself in knowing it could be a lot worse.... I have seen pictures of worse, and then there is our friend Barbara, who has lost most of the structure of her face! Thankfully, that doesn't happen to most of us. And she is such a great example of moving on with life despite that misfortune.

There is no judgement going on here, just sharing of feelings we have both experienced. We have a right to mourn the visible change in that most prominent feature right in the middle of our face, which has become part of who we are. I can understand your very good friend's getting tearful, and your emotional response to that. And yes, it is painful, emotionally and psychically. I guess if we think of people who have lost an arm or leg due to war or an accident, and what they must be going through, then we might begin to feel a bit lucky by comparison. But in any case, we still have a right to experience and express the pain of it. And this forum is here precisely for that, a place to express these things.

Thank you, too, for being here!

[pberggren1]

Of course we understand.

[drz]

I was talking with a relative on Facetime last night and shared some sad news and saw the tears in her eyes. It touched me but later after the call I thought how fortunate to have some one who cares enough to feel your pain with you and share your feelings and it gave a me a very warm feeling. That is really special and I think you are lucky to have such a friend. I too have yet to let them know how much I appreciate they caring about me, unless I find out she was peeling onions that I couldn't see.

[Debbie C]

Well put Anne and Drz. , Alysia your friend hasn't seen you in some time and probably didn't realize the extent of your illness. She is a good friend to feel your pain.

[zizzcat]

Hi Alysia:

Don't quite know what to say, except I agree, how wonderful to have a friend that cares and is so touched by what you are going through...!


I can relate in a different kind of way. For me, it's my teeth, or rather the teeth I use to have. I believe that this immune disease is the reason for all my teeth going bad at once. It wasn't painful in a physical way, amazingly, but I just never thought it would come to this. A few years ago, I had to have all my teeth pulled out except for two. The two remaining ones on the bottom would be used to hold the lower dentures down. During the past couple of months, those finally broke off, and now I have bits of broken decaying teeth barely holding my dentures in place.


The thought of this happening filled me with dread. My husband still kisses me with the same loving look in his eyes, my friends still smile and hug me, my daughters don't know yet, but I know they won't turn me away. In a way this has helped me realize how very blessed I am and that I need to realize that I am more than the image in the mirror. I'm not there yet, but working on it.


Thank you for sharing how difficult acquiring these battle scars can be.


Hope

[annekat]

Hope, I think I'll take my saddle nose over what happened to your teeth, any day. Thank goodness for your wonderful husband and friends. And yes, we all have some scars, physical or otherwise. Thanks for sharing.

[Alysia]

thanks friends. I know I can count on you :love: