In my twenties I trained and worked as a textile designer in NYC.  I moved to Rochester, NY in the early 70's and completed a Bachelor's in studio art and art therapy.  I began working with emotionally disturbed youth and families at a local non-profit agency and pursued a Master's in Social Work with a concentration in management and family therapy while continuing to work full-time as a Program Director delivering preventive services to high risk youth and families. 

I ran several community based , crisis mental health programs during my employment and maintained a small private practice.  In 1996, I began to experience health problems that appeared to be unrelated at the time: fibroid tumers requiring a hysterectomy, followed by breast cancer, fractures and bruises of unknown origin, severe, chronic back pain which resulted in a failed spinal fusion in 2003.  Finally in 2004, the pieces came together and I was diagnosed with Cushing's disease.  (Caused by a pituitary tumor).  I then underwent transphenoidal surgery which was unsuccessful.  I continued to deteriorate due to the high levels of cortisol and developed visual field loss, bi-lateral glaucoma, high blood pressure, bruises, more fractures, metatarsalagia, rosacea, "Cushing's moon face", osteoporosis, sleep apnea...I was referred to Mass General Hospital's Endocrynology Dept. where they specialize in this rare disease and had a second unsuccessful brain surgery there in 2004.  In 2005, I underwent Proton Beam radiation to the pituitary.  In the meantime, I was placed on an "Orphan Compassion Drug"  to reduce the progression of the illness while waiting (up to 4 years) to see if the radiation is effective. 

Although I have had no relief in my back and foot pain and must use a walker to ambulate a few feet at a time,  it looks as if the radiation is beginning to work and I have just gone off the medication.  Now, it is a matter of monitoring so that the cortisol level doesn't drop below normal, causing an adrenal crisis (which I experienced once due to too high a dose of medication.

I have been totally disabled since 2003.  The active life I once had has disappeared .  My professional role met my creative needs and I had little time to pursue any artwork.  I am in the process of trying to reclaim that portion of my life and it is difficult on both a physical and psychological level.

It is good to know that this site exists....it is difficult for those who do not have to cope with chronic pain to really understand what is required on a daily basis.  It is most difficult to see how people who care about you are also pained by seeing the struggle. 

It is important to be able to balance counting your blessings while giving yourself permission to express how pain changes everything.