Hahaha Too Dramatic!

Nobody ever tells me (unless a friend or two catch a photo of me like a friend did who saw this photo on my profile) I look good. So I fight the past on my own. If I like my look, I take a photo of myself. My ten year old (and her siblings) used to visit my parents. Heard the snide comments, the yelling..and could feel the dislike emanating from my mother who didn’t accept her and our other adoptee. She asked me maybe three weeks ago, so randomly! “Mommy, how come you are so kind and loving? Where did you learn? How did you learn to be nice when your parents weren’t nice?”

So you see, even though she never heard the comments about how ugly I am, about my forehead being bc too big and my lips being “embarrassing as if I’m a drunk,” she knew.

And it felt awesome knowing she feels great. That I love her and she knows it.

So..call this a late lesson in loving myself. But honestly, I took the photos because I can still stand up straight. AS hasn’t taken that away from me and I’m so grateful that if I’m just standing still and not walking and limping, nobody would know I have a disability. I will photograph every moment of normality when I feel I look nice in my eyes, in case it ends one day and I only have photos to show me who I used to be externally.

But, that’s not the aim of this post! Because I’m sick, the minds of my family are a bit… I think they carry trauma!

Exhibit A. The week the teens came home on holiday, they had turned on one of the educational videos I put together for the little ones. As I walked towards the TV, a song was playing, “Circle, circle, can you draw a circle?”

As I watched the perfect circle being drawn, I replied to the question, thinking of my not so great circle drawing, “No, not well actually …” My teens both exclaimed, “Oh no!” and “ Oh, sorry mom!” I asked why in the world my poor circle drawing would elicit such responses!

They said they thought I’d said, “I’m not well, actually!” And became worried.😅😅😅

Exhibit B. This morning, I read in an AS group that we ‘should be’ dyeing our hair blue next month for AS awareness. So I tell my husband, “I’m meant to dye my..” He interrupted in shock. You’re meant to DIE?? Why??

I cracked up again! He was truly wondering why I had a “I should be dead” idea going on😆

Behind the laughter, is the wheezy chest I haven’t told them about. I am faithfully using my pump but I don’t think my body is reacting as it should. (YET) It’s the body so sore and so tired that I literally feel like I am dying. It’s the fear that while I’m waiting for the Rinvoq to start working, it could be killing my heart or liver. Two of our members were hospitalised this week with blood clots in their lungs thanks to Rinvoq. The side effects that are happening almost daily to our group members are so bad I’m not telling them about them. So I actually AM living with a fear that I’ll die. After all, what happens to the members who DO die from blood clots? We won’t exactly hear from THEM. How many are there?

And so, I ignore all the anxiety and laugh at my poor family that thinks I’m “not well actually” and think I’m predicting my death. We all laughed. And we need every moment of lightness possible.