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Living With Scleroderma: Joy Bobo

Featured in the Spring 2014 issue of the Voice, patient Joy Bobo has offered to share some of her coping techniques to help improve your quality of life while living with scleroderma.

Always consult with your doctor before pursuing any treatment plans. Each person’s disease progression is different and requires an individualized plan. The Scleroderma Foundation in no way endorses any drugs or treatments. This reader-submitted article is provided to keep our readers informed.

joy bobo 4.jpgI am a survivor of systemic scleroderma

To be able to make this statement fills me with an incredible sense of relief and happiness. When I look back on the early days of my illness, when my diagnosis was being established and major organs were being saved, the very first thing I was told is that I have a chronic illness with no cure. Adding fuel to the fire of my imagination, I was told that there is the possibility that I will not survive! 

How scary is that? 

I won’t deny that taking in all this information is enough to overwhelm even the most positive of people. I have written this article in the first person so that I can address you as if we were sharing a cup of coffee in my warm, cozy kitchen. I am also assume that you have scleroderma, too.

Come along with me as I share what I have learned during my journey, with the hope that you will be inspired to remind yourself that it is important to take circumstance and turn it around, aiming for positivity and happiness.

Happiness is very important in our lives. Remind yourself that you are capable of creating your own happiness. I have learned that it really helps to find a hobby because it give me pleasure to have done something special, something that gives meaning to my life, and something I look forward to doing. I really like to write, to knit socks, crochet tablecloths and afghans, and play the piano. What do you like to do? Do it. It will give purpose to your being and help you overcome the “what if’s” or “why me’s.”  Reminiscing about the past doesn’t do any good and certainly doesn’t cure what ails you. Be action oriented.

I do allow myself to be sad on occasion, to have a good cry if necessary, and know that tomorrow will be a new day. I admit to myself that I do have limitations because of the severe and disabling fatigue. I try to use music, a good book, a special saying I cut out, or a call to my Mom to balance the physical symptoms that hurt my morale. I love positive words, and over the years, have saved many clippings from magazine articles or scribbled notes on napkins and paper towels. One day, I put all of these items in a scrapbook. This book is a wonderful source to overcome those “low days” that we all have from time to time. Find something that works for you so that you are prepared to address the “blues.”

I started a diary knowing that what I said would be my deepest and most private self.  Writing seems to provide a release to any pent up anxiety or fears that pop up, and makes room for positive thoughts. Remember, if you decide to do this, don’t worry about grammar or whether the sentences are complete. It is not meant for anybody else’s eyes. Sometimes, I add quotes of a positive nature to remind me of the uplifting moment. I even close my notes with prayer, which for me, is another way to promote peace of mind and hope. Oddly enough, I address my diary to my long dead sister, Marty. We were very close growing up. Talking to Marty through the written word seems to make me feel that I am talking to somebody who really cares about me, who is a good listener, and believe it or not, seems to provide answers to life’s gnawing problems. Perhaps, my words put things into perspective even though I would like to think that Marty is overseeing my life!

Grooming has a positive effect on our lives. Why, you ask? Because the way we look makes us feel better even if we don’t. When I see myself in the mirror with makeup and lipstick, somehow, I know that the day will be a good one, and that the energy necessary to achieve the look is rewarding. It seems the little things are worth the effort.

While taking oral chemotherapy, my hemoglobin dropped so low that my lips and nail beds were practically white. Hemoglobin, for those of you unfamiliar with this term, is the segment of the blood that delivers oxygen and nourishment to the cells. I noticed that if I wore a light pink lipstick, the mirror reflected a washed out appearance!  I decided that I didn’t want others to worry about me. That is, I didn’t want people to feel sorry for me. I started adding to my cheek color and wearing darker, more pronounced lip colors. This small improvement really made a difference not only to me, but also to those around me.

Consider the power of the words we say to others when responding to the question, “How are you doing?” Keep in mind that most people really want to comfort you and don’t always know what to say. They don’t always want all the facts, either. In the beginning, I spelled out everything that was going on, the whole gruesome ordeal. Then, I realized that my conversation was such a downer, not only for me, but for the recipient of so much negative force as well. Now, I just respond that I am “fine,” despite the way I really feel. Believe it or not, such an answer relieves the concerned individual. I must add that we all need to vent from time-to-time, and that’s the value of family and close friends.

I hope what I have shared with you may help you deal with your illness. Take a second look at what you are doing to make each day interesting and a day you look forward to.  Keep up your grooming and remind yourself that the effort is worthwhile, not only to you, but to others who care for you. Consider your mental attitude about your disease and recognize that it is important to add some happiness and positive activities to keep your disease under control.

Circumstance happens. Scleroderma, although rare, happens. You can give into your disease, or you can make the best of what you are facing so that you can adjust and deal with the circumstances. The attitude you develop, your willingness to help yourself, and most of all, your ability to rise above your circumstances will have a positive influence on the course of your illness, your life and ultimately, your destiny.


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