By Trudie Mitschang
Charlene was diagnosed with common variable immune deficiency (CVID) in 2008. She has been a loyal IG Living reader and an active poster to our Facebook page. Here, she shares some thoughts on life, hope and perseverance.
IGL: How has immune globulin (IG) therapy impacted your quality of life?
Charlene: The first changes I noticed were temporary increases in appetite and energy, along with decreased malaise and chronic cough. Over time, I began to notice more significant changes. Frequency of illness, ability to recover from illness, stamina and overall well-being improved. This past summer, I played tennis, rode my bicycle and even went on a hike for the first time in several years. IG replacement therapy hasn’t just increased my quality of life, it has brought quality into my life. It has helped free my body of some of the disabling symptoms of chronic illness, offering me the ability to enjoy the many gifts of life, such as family, community, creativity and more.
IGL: In one of your Facebook posts, you mentioned the importance of hope. What gives you hope?
Charlene: I have real tangible hope because I now know what it is like to have “just a cold.” I now know that I can go through a day without excruciating pain in my legs. I can be active until 7 p.m. instead of reaching a non-functioning level of fatigue before 5 p.m. I have realized that life isn’t black and white, all or nothing. Hope for me is being given the opportunity to contribute, to use my strengths, to make a positive difference and to enjoy the gifts God has given to me. I have a fighting chance and a reason to fight. That is a huge dose of hope.
IGL: What have you learned about yourself since your diagnosis?
Charlene: That I have no more right or ability to judge my own value than I do to determine anyone else’s. Feeling I am more of a burden than a contributor in any relationship is egotistical and inadvertently pushes away the love of others. For me, acting tough and desiring to be completely independent stems from a fear of admitting that I genuinely need others and that others genuinely need me. Being honest about such fears and negative thinking is the first step to overcoming them.
IGL: We all need cheerleaders. Who is in your rooting section?
Charlene: Without a doubt, my family. For me, family is traditional as in my husband and daughters, parents and in-laws. But I also have family through church. I have family in friends and community. Having a chronic illness can be quite isolating at times. We must be careful to not let our illness blind us from the many ways people in our lives cheer us on and the many ways we are cheerleaders for them.
IGL: Finish the following statement: If time, money and health were no object, I would…
Charlene: I would host every Thanksgiving and Christmas dinner at my home - being sure to invite friends, family, acquaintances and even the occasional stranger. I would provide art lessons. I would go back to college and earn my degree in art therapy, social work, medical research, statistics, philosophy, spirituality, neuropsychology, child development and more. I would become an advocate. I would become a missionary. I would join the Peace Corps. I would travel across the United States and visit many different countries throughout the world. The thought of such freedom is exhilarating! I find comfort in knowing that no matter what amount of time, money or health I may have in this life, I will never run out of ideas, projects, curiosity, interests and goals.
IGL: What advice would you offer others dealing with chronic illness?
Charlene: IGL recently posed a question on Facebook regarding perseverance. The question provoked a passionate reply, which inspired a poem. I would like to share that poem. (Shene is a childhood nickname that I use as my pseudonym.)
Persevere - By Shene
I choose to be realistic about my limitations in order to truly know and use my strengths.
I choose to ask for help in order to truly be able to offer help to others.
I choose to let myself have “bad days” so that I can truly appreciate and enjoy the “good days.”
I choose to learn as much as I can about my diagnosis so that I do not become my diagnosis.
I choose to accept the things that I cannot change so that I may use my energy on the things I can change.
I choose to reach out so that I may not become hidden in the shadows.
I choose to fear loss so that I may experience gain.
I choose to endure pain so that I may know of hope.
I persevere by accepting who I was before, who I am now and who I can become.
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