u/xx_xxElisha

I’ve been diagnosed with MCAS for 5years after getting ill 12years ago. I got diagnosed with MCAS from a positive 24hr urine test, symptom score, and I think high tryptase, but I can’t remember the result as I was so ill at the time that everything back then is foggy.
I have had improvement being on lots of antihistamines and especially Xolair although my daily life is still effected. Mostly now by cough triggered by eating, neurological symptoms, and an ill feeling in my body mostly after eating. Rashes are reduced to only being triggered by the heat. Without medication I have chronic diarrhoea, weird rashes especially on my neck, lip/throat swelling, heavy periods, and have had an unexplained anaphylaxis
Reading up on mast cell diseases the symptoms of systemic mastocytosis and MCAS are identical

My dr has never even mentioned mastocytosis to me, how do I know it’s not that? Is the only way to tell a bone marrow biopsy or is there other tell tale signs and differences?

The title is exactly it, in a nutshell.
I feel very deeply that life without art, expression, passion, is a confined and shallow existence.
It creates deep feelings for me when I am forced to align with such a lifestyle.
My passion is art in the form of painting/drawing. Ever since I was a child I have lived and breathed to create, I have not once in the memory I hold picked up a pencil and not craved to put it to paper. I show my love through these pieces and this confinement blocks me from expressing my love for life and people in my true and open way.
I am severely ill
I have been since I was a child
I have times where I can create, non without repercussion from my in-part useless body, non without pain or sickness. All to meet a craving, a desire.
I want to paint in my deep and relaxed state and not be stopped by an inevitable barrier that I cannot safely cross.
I want to live a life that I believe is full.

Is living truly made into a full and satisfying life only by the existence of art?

I am putting together a package for my friend who is chronically ill and often bedbound. She loves makeup and self care but for obvious reasons can’t put on makeup as often as she would like.
What are some products that could make her feel done up, a little bit special etc that is easy to use. Something that you wouldn’t HAVE to take off before sleeping would be perfect too, (like a lip stain which wouldn’t transfer) I’m not good with makeup! So need all the help to make it nice for her. 💕