The story of Suzi
I am a retired recitalist/ music teacher/performing artist/educator and composer living in Arizona.
With several rare autoimmune (IgG, IMg, D3 and B12 deficiencies) and 3 lymphatic diseases (Dercums, Madelungs and Lipedema called RADS, or Rare Adipose Diseases) as well as being diagnosed with MCAD in 2015 and now MTHFR (unable to absorb B vitamins unless in a methylated form) and waiting for a diagnosis of EDS (Ehlers Danlos)
I find that even though I have travelled the country to get the best possible medical care for these conditions and have been able to find ways to live in as little pain as possible, I have had to find a way to accept and understand that as of now, there are only hacks that help me and other people in similar situations find relief and get on with their lives.
A laundry list of medicines and supplements and therapies control my every day but I have my dear husband and many sweet pets at our home that help me keep my spirits up. I travel less than I used to, because the airplane trip exhausts me and because of the MCAD (Mast Cell Activation Disorder (also called a Syndrome) I am allergic to many environmental allergic triggers which include the cabin air on planes and in hotels, Drugstores, Health Stores using aromatherapy, water with chlorine in it and many many types of air fresheners found in the bathrooms of stores, hospitals, offices and more.
From seeing the stories of so many other patients, young and old who must live with rare diseases, I have been inspired and gotten strength and drive to continue my own musical work. Many of my CDs can be found and heard entirely at my website. www.mysuzimore.com. My good friends and I finished an 8 year recording project to produce the lost song cycles of a Holocaust composer named Max Kowalski. Proudly, we finished the recording and gave a CD release party (June 2016) on the 60th anniversary of his death on June 4th, 1956 with a 2 CD digipac of 81 song tracks. Now, all of his music that was once lost has be recorded for all to hear again. I live each day one day at a time and aim for doing something small each day, that is how we did the recording, one or two songs at a time and after all the years they added up to a great work. I have learned what I need to use when one type of pain hits me or another. I have learned that reducing swelling has helped me to have less Dercums tumor growth and try to stick very close to my diet and not skip any of the H1 and H2 blockers and several supplements used to treat the MCAD. I stay away from as many triggers as possible and know that I must not do anything to strenuous because of connective tissue problems. Hard to do because I led such an active life (once I serviced over 900 music students a week) but I know the consequences of bad diet and lifestyle so I just have had to learn to be careful and rest often and thank God that I found the fabulous doctors in the East and West that I found, in time to stay alive…Dr. Karen Herbst at Banner Hospital in Tucson, Az. (RADs) Dr. Lawrence Afrin in Minneapolis at University of Minnesota Hospital for MCAD, Dr. Momeni my Plastic Surgeon at Summit Medical Group, Berkeley Heights, NJ, who believed the Dercums lipomas were painful and took as many out as he could through the last ten years. Dr. Robert Lahita, Director of Medicine, Beth Israel Hospital, Newark, NJ possessing extensive knowledge of Autoimmune Conditions, Dr. Hendricks Whitman. Hospital for Special Surgery NYC (HSS) who has been my rheumatologist for many years and never gave up on helping me find the answer to my significant pain and suffering even when other doctors dismissed it as hypochondria. I do not know what I would have done if they hadn’t shown the compassion and interest that made them great in my life. I will never stop raving about their good work and I will always be indebted to them because I know so many people who have suffered much more than I have and pray daily and hope for new findings.