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Pain Connection welcomes articles, poems and drawings from members and families to provide an insight into their lives.

Susan's Story

In the year 2000, I was 46 and starting to notice that my daily runs were becoming much too difficult and began going to various doctors to find explanations for the changes in my body. The most prominent symptoms were severe joint pains, painful muscle spasms, periods of dizziness and lightheadedness that increased in frequency during normal exercise and every day activity.

In 2001 the symptoms were increasing in frequency and my husband was starting to think that there was a deep underlying problem that doctors were failing to identify. In that same year I was walking a friend's dog and then out of the blue my head began to spin and I began to see stars and suddenly all feeling left my legs and I collapsed to the ground. I was in tremendous pain and my head felt like I was being pounded by hammer. After lying there for some time I barely regained my ability to walk and was able to get to a phone and contact my HMO and try to get help. The HMO, as you might guess seemed unfazed by the incident and just asked me to come in and confer with my doctor at the time. I begged her for real help as I knew this was a symptom of a serious illness. After several more incidents similar in nature, I finally had one that was so obvious even a child would of known the difference. I woke up at 6 AM and took the recycling out and started to feel intense sharp pain in my arms and began vomiting and sweating so intensely that I was now sure that these were the symptoms of heart distress. My husband rushed me to my HMO and I kept insisting its my heart and begging the staff to please check me for everything. They did their standard EKG and stated it was normal which for them is the be all and end all tests for women with coronary distress. During the visit I kept stating it was my heart but to no avail. Guess what? Some incompetent doctor decided I had severe reflux. Oh yes, the reflux made me do it defense. Less than a year later I was found to have a very large tumor(benign) in my heart. It is called a left atrium myxoma which is rare in its occurrence, and primarily affects women in their late forties.

I can't say my recovery from emergency open heart was easy as I now have a pacemaker and can write volumes on post surgical arthriyma's. I am alive and kicking and hope my story will empower women to not accept no for an answer and to listen to their gut as they encounter a medical system still not aware of the reality of heart disease and Women's health.

- Group Member since 2004 -

EGGing Each Other On - Incitement to Insight

Surprisingly powerful medicine was found with the habit of writing a list of 5 things to be thankful for. Debilitating illness became easier to live with! "Counting your blessings" is commonly practiced in many spiritual traditions, but I wasn't doing it. I was skeptical it could make any difference. At the time, no new drug, diet change or exercise appealed to me. Gratitude journaling was one more thing to work into my day, however, it required no exhausting trips, no one with whom to coordinate, and little expense. Regardless of outcome, I counted on learning something. Frustration, anger, and grief were using more of my energy than I realized. Underneath a pleasant facade, I wasn't as positive as I gave myself credit for. So called "bad days", the ones with extra symptoms or nothing that goes well, made it difficult to write things to be thankful for, but I persisted. Cultivating gratitude helped me accept my whole self. Writing grateful statements loosened the grip draining emotions had on me, freeing my spirit. My symptoms were still present, but handling life became easier. My language changed; I replaced "bad" with "difficult" when describing awful days. This led to my becoming more enjoyable company. Subsequently, I attracted more help and understanding. A more grateful frame of mind seemed to attract fresh ideas about treatment and draw new people into my life. I was happier more of the time. I found more meaning in suffering. Within a few months, I unexpectedly moved to a nicer home. Within a few years, I was ready for, and found, new medicine. Finding anything positive in devastating illness is challenging. After a long period of stressful illness, our thoughts, body sensations, and emotions may feel disconnected and at cross purposes. In order to help myself and others practice gratitude, I started a free discussion forum called Elly's Gratitude Group (EGG). Participants include people with fibromylagia, chronic fatigue syndrome, orthostatic intolerance, MVP Syndrome and vulvodynia, gain experience identifying blessings by framing thoughts, feelings, and situations more constructively. What is seen within a picture is always influenced by its frame. Though it is valuable and necessary to discuss symptoms, treatments, and disability information at regular illness group meetings, many members crave something else.

EGG invites holistic consideration of mind/thinking, body/feeling, and soul/seeking as an avenue to move toward wellness. The goal is to increase, rather than diminish, energy by initiating and practicing new ways of self-talk as well as new ways of talking with each other. Members encourage each other to flip complaining or self-deprecating statements into neutral or uplifting ones, to pay attention to what's working well without diminishing the number, severity, or complexity of anyone's medical difficulties. Finding something positive coexisting with devastating illness takes practice! Being familiar with the shorthand language of life with our conditions, we get right to it. Egging each other on from incitement to insight, EGG provides a shell-ter where one is free to admit feeling scrambled, poached, cracked, or deviled. Surprisingly, incubating a gratitude attitude with companions is strong, fun medicine.

Written by Elly Brosius with Toni Marshall

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