I’m never sure how much personal information I should give on a blog that is meant to be for business, but in some cases personal and business cannot be separated, which I think is probably the case with a lot of people who sell their arts and crafts.
Over the last several years, I have struggled with some wide ranging and seemingly unconnected medical problems, from frequent sinus issues to achy joints and fatigue. These sorts of issues can spill into your business life when you are not feeling well enough to work on your art, as I did for a while this year. Even if I felt well, often I would have little or no energy to devote to making jewelry. In addition, we were dealing with some very difficult problems with one of our sons, contributing to the stress I was feeling. Those were very dark times for me.
After consultations with several different physicians and a lot of research, I was diagnosed with a rare autoimmune disease. Wegener’s Granulomatosis is a form of Vasculitis, a family of autoimmune diseases in which the immune system attacks the blood vessels and causes swelling of the vessels. With Wegener’s, the small and medium blood vessels are affected, especially those in the upper respiratory tract, resulting in inflammation and tissue damage. In my case, it caused a hole in my septum (the wall that separates your nostrils). I have also had frequent and long-lasting sinus infections and bloody noses. Wegener’s can also affect the lungs, the trachea, the eyes, joints, heart and kidneys. By the time I was diagnosed, I was having difficulty breathing, especially when I exercised, and arthritic pain in my joints, mostly my wrists and hands. Up until the 1970’s there was little treatment for Wegener’s and if the disease progressed to the kidneys, dialysis would be necessary. Once Wegener’s hit the kidneys, the prognosis was not good. Modern medicines have changed the outlook for Wegener’s (and other Vasculitis) patients dramatically.
I am very lucky for several reasons. First, I found a doctor who was very quick in diagnosing the disease. He is a Rheumatologist specializing in Vasculitis in Boston and quickly put all my symptoms together even though others had not. Secondly, I have a limited form of the disease, which means it has not reached my kidneys. With treatment, hopefully we can prevent further progression of the Wegener’s and limit the tissue damage. I live in a time where there is now treatment available and more is known about the disease. There are studies being done all the time for new treatments. And I am so thankful that I have insurance that is covering the treatments. I have a wonderfully supportive husband, family and friends who understand when I have “hit the wall” and need to rest. I have had no major problems with the medications I am taking, which do cause pretty nasty side effects in some people. The combination of immunosuppressants and prednisone is helping manage my symptoms so that I can live a normal life.
All of these things have given me a hope I didn’t have before my diagnosis. When you are in pain, it’s hard to see past it. When you barely have enough energy to get out of bed, it’s hard to summon the mental and emotional energy to get through hard times. And so after I began treatment and the pain started to go away, I began to have hope that things would not always be bad. I have good days and bad days with Wegener’s, as I am sure anyone with an autoimmune disease understands. To remind myself on the bad days that there will also be good ones, I made myself a charm shaped like an awareness ribbon with the word HOPE stamped into it.
I began to think that there might be others who also want to have hope or to give it to others, and so I have created my HOPE jewelry line. Each piece is stamped with the word HOPE. They will be available in necklace or pin form. Each piece is hand-made by me with Precious Metal Clay. I added a purple cubic zirconia to my charm as purple is the awareness color for Wegener’s. I have also made a heart charm with HOPE stamped into it that I have entitled “Keep HOPE Close to Your Heart”.
This is my little way to spread hope to others who might need it. For any reason – not just a disease or illness. $5.00 of each sale will go to the charity of the purchaser’s choice in their name, or to the Vasculitis Foundation, if they have no preference. You can see my new line of HOPE jewelry here.
For more information on Wegener’s Granulomatosis and other Vasculitis diseases, you can visit the Vasculitis Foundation at www.vasculitisfoundation.org.
