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Father’s Day

Posted on Jun 16, 2017 in Blog |

I mourn for a father lost, and i celebrate my husband who gave me a son. I didn’t want children when Jeff Rainey and I married. I woke up one morning, turned over and said, “Honey, I want to have a baby.” He replied without missing a beat, “It’s a good thing I’m flexible.” My teacher today reassured me that though I miss Dad greatly, he fulfilled all of his obligations here and did all God needed him to do. His life was complete. I trust in that knowledge. But it still makes me wistful. And it does not take away Mom’s pain which remains fresh and unsettled. My teacher and I talked about the trip to Turks and Caicos – you remember, the #vacationofalifetime. She said, “Every time you think of that trip, you think of it as magical . . . ” I nodded my head. We all do. We all believe it was a magical trip. She shook her head no. “That, my dear, was Love. It was Love felt by every single one of you at one point or another during those seven days. For once, for just a little bit, you felt as though you belonged in that family in all ways. It wasn’t magic, Sharon. It was LOVE.” A friend of mine is in Turks and Caicos right now with his own family. The first night, he sent me photos of the sunset and texted, “It’s your dad saying hi from T & C.” It made me cry, in a good way. I suppose what I am trying to say in a convoluted way is that while these holidays are difficult for those of us who cannot be with our loved ones, to remember they truly are with us. I know when i look at the empty chair, or when we holds hands to say grace, instead of looking for Dad, or Jim (Jeff’s dad), or Aunt Betty, or Troup, or Aunt Cherry, I simply need to close my eyes, take in a breath, and feel them. I might feel a light brush on the cheek, or the sun shining a bit brighter,...

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The Emotionality of Lyme Disease

Posted on May 27, 2017 in Blog |

It has been an uncomfortable month for me. I have spent each day trying to educate everyone around me about Lyme disease, about Bartonella, about chronic infections. I have tried to educate and let people know about the devastation of this set of deadly diseases. I look through pictures and realize who is gone, who died, who is too weak to participate, who has given up. My aunt Betty died in 2002 from a pulmonary embolism – she was too weak from the Lyme disease to walk, so she was wheelchair bound. She died instantly. Two years ago, while attending a Lyme rally in Arlington, I had a pulmonary embolism and didn’t know it. It was another week before I finally saw a vascular surgeon who sent me to the Emergency Room immediately. By then, the DVT (deep vein thrombosis) was from my ankle all the way up to my groin into my femoral vein. My shortness of breath that I had for two weeks was pulmonary emboli that just hadn’t killed me like they did Aunt Betty. A few months ago, I had the same shortness of breath and bloodwork revealed I had survived another DVT. Maybe I’m having a bit of survivor’s guilt. I don’t know why so many incredible loving souls have died and I remain here. I hold onto the thought that God says my work here is not complete yet, so He keeps me around to finish my job. My job isn’t just to educate you about Lyme. My job here is to love each soul as God loves us. We are all part of one great energy source that IS L O V E. I didn’t learn this until my father’s death on March 25, 2016. It took 26 days and nights of miraculous, amazing conversations, and immeasurable love with my Dad to get me to realize some of God’s gifts to my soul, to my relationships. I am grateful to have this opportunity to tell you my experience, strength, and hope in conquering Lyme disease. But I am even more grateful for the love shared among those I have opened up to...

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One Spouse’s View of Lyme Disease

Posted on May 20, 2017 in Blog |

My husband Jeff wrote an entire chapter in our book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I have included his concluding paragraphs below. It is work, hard, daily work, to support and love a spouse, partner or family member with Lyme and co-infections. But it is vital. Every patient needs and wants to be loved and believed. They are not crazy, or “attention seekers.” They are not making this up. Each and every symptom is real. They are in pain. They are confused. They have very real problems making simple decisions; even the day-to-day decisions are difficult. It is hard to describe the exhaustion because it is so bone and soul deep. The look in the eyes of the infected is deep-set and far away pain and angst ridden. The hurt is deep. Often, the only thing that helps is holding them and reassuring them they are loved and you will be there for them. It is this depth of unconditional love we must wrap them with. Love and care is healing. Share...

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What We Need Our Friends and Families to Know

Posted on May 19, 2017 in Blog |

Patients with Lyme Disease or co-infections of Lyme Disease are NOT: lazy, faking, sensationalizing, imagining things; refusing to learn or grow, avoiding responsibility going to grow out of it crazy contagious; it is safe to hug us “just depressed”; if we are depressed, it is because of living with Lyme, not the other way around. Patients with Lyme Disease or co-infections of Lyme Disease ARE: physically ill actually, very ill overwhelmed and frustrated their body cannot work the way they need it to experiencing real pain, often excruciating unique in that we each present with different symptoms; no two patients are the same examples of what can happen to your friend, sister, cousin or boss who has been sick for a long time with no answers; we share our stories so others may find a shorter path to a correct diagnosis Patients with Lyme Disease or co-infections of Lyme Disease DON’T want to hear: You don’t look sick! Are you ever going to heal from this? (Would you ask a cancer patient this question?) But you seemed fine ten minutes ago. But I thought you rested yesterday. Oh good! Now you are better and you can go back to the way you used to live/work! Maybe you should see a psychiatrist. But you looked fine yesterday. I already told you this. Get a grip; there is nothing wrong with you. So what, I get rashes all the time. If this was real, the CDC would do something about it. I know people who have real problems. Are you sure you have a good doctor? When you are going to finally be rid of this thing? What time is dinner? Are you sure you have Lyme Disease? How can anyone have that many symptoms? Do you really need to take all those pills? Isn’t it time you get over this thing? Patients with Lyme Disease or co-infections of Lyme Disease NEED: validation they are truly ill and require treatment help accomplishing the simplest of tasks your love and your physical and emotional support to feel wanted your respect others to know we are not weak hugs loved ones to make...

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When Words Become Unlanguagable

Posted on May 13, 2017 in Blog |

Earllier this week, I saw this photo of Glennon Doyle Melton on Facebook. The power of the imagery was almost overwhelming for me. I remain in awe of Glennon’s determination to live authentically. While I do not necessarily agree with all that she has said, says, or believes, I honor her as a fellow Love Warrior and know that she is doing exactly what she needs to do in this life. A day later, I saw this photo of my son and his girlfriend. Again, no words are necessary to describe the love, commitment, and desire these two young lovebirds hold for one another. For the past 14 months, since Dad’s death, I have found my emotions and everything else in my life unlanguageable. I have tried to write of my grief, sometimes successfully, but mostly, lacking in depth and breadth of what is happening in my heart. I have been silent in many ways because I didn’t know how to explain my experience. In the past year of combing through thousands and thousands of photos, I have found a few treasures. I see the look Dad gave Mom and the love becomes tangible for me again. I see that same love in a few photos of Jeff and me as well. Again, words cannot describe the heart. Only the image can. Without cause or prior notice, a few days before my birthday, I started to dream in images. Vivid images. I mentioned to Jeff that I thought I wanted to paint. No, I needed to paint. I had never painted before and was actually jealous of the artists around me who could create such magical visions. Jeff bought me an easel and other supplies and encouraged me to move forward. And I did. For the past two months, I have been painting almost daily, almost in a manic mode. I cannot produce these visions quickly enough at times. I have been told I have some talent for which I am grateful. Though, honestly, I am doing this for me and for no one else. Painting is the only way I have found to describe my heart and my...

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