Living with cancer, diabetes, heart problems, sarcoidosis, and other chronic health conditions is rough on the patient and those "others" in his/her life. Maneuvering within today's medical environments can make living with illnesses even rougher. A Patient's Voice helps ease the physical demands and mental emotions of a person by utilizing the author's 20 plus years of experience, both personal and professional, living with those chronic health conditions - and more - along with his understanding of the health care system. Rather it is building relationships with your medical family, the importance of caregivers, understanding the insurance requirements of health care, or coping with the day to day struggles of life as a patient, by way of his health stories, A Patient's Voice has something for everyone - written exclusively from a patient's perspective and personal experiences. Everyone will have health issues at some time in your life. A Patient's Voice will inspire and give valuable insight, as only an experienced patient can, so your current, and future, medical experiences will be positive and successful.
A Patient's Voice
Inspiring And Practical Advice About Living With Chronic Health Conditions, Such As Cancer & Sarcoidosis, And Achieving Positive Results Regarding ALL Of Your Health Care Needs - All Written From A Patient's Perspective and Personal Experiences!By Gilbert Barr, Jr.iUniverse, Inc.
Copyright © 2009 Gilbert Barr, Jr.
All right reserved.ISBN: 978-1-4401-1988-0Contents
Why This Book?......................................................ixThe Ups And Downs Of Life...........................................1A New Reality.......................................................13Learning How To Be A Successful Patient.............................283-Step Philosophy For Success.......................................43What A Difference A Doctor Makes!...................................56The Appointment.....................................................67Building A Medical Family...........................................80Dental And Pharmaceutical Connections...............................98Caregivers ... One Of The hardest Jobs On Earth.....................112Guilt...............................................................125When The Patient Becomes The Caregiver..............................140Understanding Insurance Is The Difference...........................161To Be Honest Or Be Silent...........................................180Sexuality, Diet, And Self-Esteem....................................191No One Is Immune From Cancer........................................206Acknowledgments.....................................................237
Chapter One
The Ups And Downs Of Life
I didn't start out life as someone who could be entitled a "Professional Patient". No, it was a long and painful experience, literally and figuratively, physically and mentally, financially and emotionally! For those of you who have read my two previous books, the first two chapters will sound familiar as I tell my story, although a lot has changed since my last book was released in 2004. I hope you will still come away with something new that will make your life more positive. For those who haven't - here is my story.
From 1958 through 1985 I lived a normal life from a health perspective. I had a couple broken bones, colds, too many jammed fingers to count, and a wet sinus problem due to my allergic reaction to the pollen generated by the pine trees that were everywhere in Taylor County. I played basketball practically everyday, sometimes more than once, and swam regularly as well. I was at the top of my game physically and in the prime of my life. However once I moved to Detroit things changed immediately.
The first noticeable change was with my sinus problems, as they changed from wet mucus to hard mucus making it at times difficult to breathe. As a result I started developing migraine headaches, which I must admit were extremely painful.
My migraines were very unique and specific in the fact they would only occur in the left corner of my right eye. At first I could tolerate them but as time went on they got to the point I had to stop everything I was doing because I just couldn't function, as they would last anywhere from a couple of hours to over 12 hours. When they were active it felt as if someone was applying pressure directly to a nerve, similar to when a dentist touches an exposed nerve before the Novocain has had time to start working, only the dentist continued to apply pressure. Then without warning they would immediately stop, and when I say immediately, I mean immediately! It was the greatest sensation I have ever felt but yet amazing at the same time.
Throughout 1986 the migraines continued and I did my best to tolerate them. By 1987 they were occurring at least once a week. As it was about to turn out my migraines were only a small piece of the puzzle God was getting ready to place me in. I was about to encounter a major test of Faith. In January 1987 a dramatic event took place in my life and without warning my future changed.
When I moved to Detroit my girlfriend of five years, Cynthia Vanessa Reese, came with me. On a cold night in January we went to bed around 11:00 o'clock. We had a long talk about how lucky we were to have each other and how good we got along, as we were not only lovers but best friends as well, with plans to marry in June. She went to the restroom, came back to bed and we both said to each other, "I love you." The next morning I woke up, Vanessa didn't! She died in her sleep at the age of 27 as a result of Pulmonary Emboli, which the doctor described as a shower of blood clots (more than five) to the lungs at one time. Needless to say my world was turned upside down in a stop of a heartbeat.
I spent 1987 grieving and at the same time dealing with the migraines, which were now causing me to vomit mucus on a regular basis as well. I played them off as part of the grieving process but deep down I knew something wasn't right. Since I had never been sick before I didn't understand how to get the help I needed as the doctors seemed unconcerned.
Around the end of 1987, although I still missed Vanessa greatly, I knew life went on and I too had to start focusing on living. Aside from the migraines and vomiting on what was now almost a daily basis, other symptoms started to occur as well. I started to experience extreme thirst and a strong sensation to urinate frequently. Neither of these symptoms were anything like I had ever experienced and both were so strong it would feel as if you would go into shock if the need was not satisfied. To this day I still can't accurately articulate the feelings.
As a result of the symptoms I was experiencing my appetite started to decrease causing me to have a constant drop in weight. My energy levels were making it difficult to do basic everyday functions such as going to work or hanging out with friends. It was getting where even playing basketball, a major part of my life, was too much as I would usually vomit after a few games and have to stop playing. Around this time blood started to accompany the mucus which I was throwing up. At times not only was it a painful experience but could be a messy one as well. I started keeping extra shirts in my cubical at work in case I messed one up during the day and I always wore white shirts, hoping no one would notice if I changed shirts during the day. My health was now changing my everyday quality of life in more ways than one.
From 1988 through 1989 other symptoms started to appear such as skin problems. The skin problems were two-fold with one affecting my face, as it started to become two-toned in no specific pattern. The other symptom was skin poison which consisted of itching red blisters covering my arm. This struck me as weird since growing up in Florida I had never even used sunscreen without problems, and now I was getting sun poison just driving my car. The mental aspect of these health changes was starting to take a major toll on me.
Anyone who has experienced health problems, especially mysterious symptoms with no positive results or diagnosis, will tell you the mental aspect of your situation outweighs the physical pain. The fear of the unknown and subliminal denial that your health is deteriorating can cause depression. You are in trouble once you start giving in to the mental pressure. For me, this is when I put my faith in God and continue to live life to the best of my ability and circumstances, although I must admit it was getting harder each and every day as the symptoms continued to mount.
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