“One thing no one sees about my illness is…”

The one thing no one sees about my illness is that a short time ago I was energetic, happy, able to do almost anything. Now I have to structure my day to fit in normal activities with friends . I’m pretty tired by the afternoon. I have to figure out IF I can say yes to things. Realtor Joy

This is my second cancer

What they don't see or understand is just how difficult it is to plan anything. They don't understand how depressing it is to not be able to do all the things you always just took for granted. And they don't understand how it feels to be "left behind" once you are no longer as able as you used to be.

One thing no one sees about my illness is, how I feel like I am not able to make any of my medications make my breathing during walking or carrying groceries up my stairs easier for me.

The one thing that no one sees about my illness is the excessive debt medically

the tears and fear of the unknown of my future

The constant numbing sensation in my hands and feet. And my inner sense of balance is shot! Texting on a cell phone or writing with a pen people assume it’s easy but I’m struggling. Overtime my cell feels like a five pound hand weight. My legs have gotten weak now I can barely stand but it’s my balance as if i never walked before in my life I move slow because it’s not just with standing i feel a constant full body imbalance. Normal things are often expected of me most of what I’m dealing with can’t be seen by the naked eye

Question? How are you doing? Answer, ok how are you doing?

You look tired, yep just having a bad day.

Someone told me you haven't been feeling good?

Have good and bad days.

What's wrong?

I have systemic scleroderma.

What's that? Never heard of it.

It's a autoimmune disease.

Well at least it's not cancer.

Ya that's a horrible thing.

Well get some rest. You'll feel better.