I was a vice president for Regions Bank, a member of the Hispanic Chamber of Commerce, a very independent woman, a wife, a busy aunt with seven nieces and nephews, always on the go, loved to entertain at home with family and friends, in other words “unstoppable”. Then God decided I had to stop and sent vasculitis my way knowing I was strong enough to meet the challenge and come out winning with his guidance and blessings.
My symptoms started in May 1999 with severe abdominal pain, vomiting, aches all over, lack of concentration at work, sleepless nights and many, many visits to the emergency room (ER), hospital stays for weeks at a time, exploratory abdominal surgery, MRIs, CT scans and all kinds of lab work with no answers until my regular doctor and my gastroenterologist decided to do an angiogram. “Bingo,” we finally had an answer: Polyarteritis nodosa, a rare chronic life-threatening disease in the vasculitis family. Really? Lucky me! I was referred to a rheumatologist and my life with vasculitis began.
Going back to that time is bittersweet because as hard as it was then, I know now that it was a time of learning about my strength, my faith, changing priorities, sharing and supporting others, learning to be humble in receiving instead of giving, learning to say no, treasuring family and friends and understanding that choices needed to be made.
Knowing you have a life-threatening disease can either shatter or enhance your life depending on the choices you make. I chose to enhance mine.
I found the PAN Support Group on the Internet; the group was founded by my dear friend, Ed Becker, in memory of his mother, Florence, who lost her battle with PAN. The members of the support group became my extended family; there were only around 80 people in the group in 2000. We supported each other in sharing our symptoms, treatments and experiences. A few of us chatted in the middle of the night when we could not sleep due to the high dosages of prednisone; we called ourselves the Night Owls. We joked and laughed about our prednisone faces and bodies. In other words, we did not feel isolated, different and we did not take pity on ourselves. We were there for each other as our lives where changing faster than we could keep up with. Together, all of it was manageable and bearable. Some of us are still in each other’s lives and we get together as our schedules and time permit. Others continue to communicate by phone, emails or/and Facebook. The group now has over 600 members.
This group introduced me to the Vasculitis Foundation (VF) which in turn gave me the tools to educate myself to make better choices for my care and to have a better understanding of the disease, the treatments, as well as the side effects. The VF gave me the confidence to take control of my care and the determination to overcome the challenge that God had sent my way.
I chose quality of life instead of quantity and began a very aggressive treatment of prednisone and Cytoxan by pill form. I took fear out of the equation and I never once worried about the treatment’s side effects. My focus was to control the disease and reach remission. I let go and let God!
I also looked into alternative/holistic methods that were helpful in balancing my emotions, mind and body.
Remission came in 2003. Remission does not mean I am cured or live without pain. It means I have learned to live with what I call “normal pain” and it means I changed my lifestyle, my eating habits and my physical activities. It also means taking only 3 mgs of prednisone and no Cytoxan, listening to my body and knowing when I have to rest, no visits to the ER the last four years and visiting the rheumatologist only once every four months. It also means, at least for me, that vasculitis prepared me for my battle with breast cancer in 2004 as the chemo treatments and side effects were easier because I had already taken Cytoxan. I never got sick, although I lost my hair but it came back this beautiful gray color and I’m happy to say that I am a seven-year breast cancer survivor.
Most of all having vasculitis means that I value life in a way I never did before. It means that I try to help others in sharing my journey and supporting them in theirs. It means that I find joy in the little things in life I missed when I was so busy living without vasculitis. It means that there is life after vasculitis. I am busy in a different way as my life is better than ever and I am here to prove it! I am living an Extraordinary Life!
I wish you love and blessings in your journey!
Published: January 2013
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