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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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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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My Playlist from Dad’s Final 26 Days – The Songs with Words – Part 2

Posted on Aug 6, 2016 in Blog |

As I stated in my earlier post: During Dad’s 26 days and nights in the hospital, I listened to particular songs depending on what I needed. The music helped close out the hospital noises, helped me calm my breathing and anxiety, and it gave me a place for my emotions to connect and feel safe. This music transcended me at times. It felt as though I was talking to Dad in some of the songs, giving words to emotions that were so strong, I wasn’t sure I could survive the pain. Some of the songs were significant in their melodic tone, some were because of the specific lyrics, and some, because they allowed my tears to flow more easily. And some were my simple prayers to God, pleading for Him to heal Dad. Some of us connect through words, some through deeds and others through music. In my pain, when I couldn’t find my words, these songs found them for me. I probably should have researched what each of these songs meant to the songwriters, but at the time I was choosing them, it didn’t matter. What mattered was how I could maintain hope, a sense of balance, and my connection to Dad. These are the songs that ended up on my list. The Songs with Words About You – the Breakthrough by Mary J. Blige Every now and then, I needed to hear the voice of a strong woman who has risen above her struggles and succeed in being the woman God wanted her to be. Mary J. Blige is one of those amazing women who defeated demons in her life and now brings joy and light to others. “I am in the place with the love / Yeah, it feels, it feels good / (It’s a new life for me, yeah)” The Big Love Has Died – 7 by Seal I still cry every single time I hear this song. The love between a father and daughter is a Big Love. And mine has died. “So confused, I’m amazed, I refused to believe you’d never change in my time spent with you” “And I believed in everything...

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My Play List During Dad’s Final 26 Days – Part 1 – The Instrumentals

Posted on Aug 1, 2016 in Blog |

PART 1 – The Instrumentals During Dad’s 26 days and nights in the hospital, I listened to particular songs depending on what I needed. The music helped close out the hospital noises, helped me calm my breathing and anxiety, and it gave me a place for my emotions to connect and feel safe. This music transcended me at times. It felt as though I was talking to Dad in some of the songs, giving words to emotions that were so strong, I wasn’t sure I could survive the pain. Some of the songs were significant in their melodic tone, some were because of the specific lyrics, and some, because they allowed my tears to flow more easily. And some were my simple prayers to God, pleading for Him to heal Dad. Some of us connect through words, some through deeds and others through music. In my pain, when I couldn’t find my words, these songs found them for me. I probably should have researched what each of these songs meant to the songwriters, but at the time I was choosing them, it didn’t matter. What mattered was how I could maintain hope, a sense of balance, and my connection to Dad. These are the songs that ended up on my list. The Instrumentals A Change in Circumstance – Secret Story by Pat Metheny The name of this song is what intrigued me originally. It was my ironic understatement for what was transpiring. The entire family always thought Mom would die before Dad solely based on her extensive medical history of strokes. The first two weeks of Dad’s medical crisis, we were all in shock and disbelief that this was actually happening. Cathedral in a Suitcase – Secret Story by Pat Metheny This song is what Heaven looks like: grand, opulent, vibrant, joyous. Epilogue: Writing in the Darkness II – Spiritland by Andrey Cachelero I found this song a few years ago when I had writer’s block. It took me to that dark place and let me walk around in it instead of just being afraid of and intimidated by it. And then it brought me to the light. And...

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Mired in Muck

Posted on May 4, 2016 in Blog |

May 3, 2016 Today, I was going to write another inspiring, hopeful blog about #Lyme disease, encouraging all the patients out there that they too can heal. I have an entire spreadsheet of quotes from Lyme Savvy that I want to write blog postings about to explain why we said what we said. I started a Word file with the first two days of blog postings. And then today happened. I woke up in pain. It was hard to get moving. I went to work and tried to update some software that took two and a half hours and I am still not done because it didn’t install where it said it was installing (and I have a professional who can back me up on that, it wasn’t just me reading something incorrectly). I had two computers and couldn’t use either one because of this damn software malfunction. Then, I left to go to the Lyme doctor’s office. I got some TLC there, but it is emotionally and physically draining. Jeff has been driving me everywhere since Dad died. I’m not a safe driver right now for long distances. The crying from grief attacks me at inopportune moments, like when I am on the road, or in the shower, or on a phone call with a client, or before we go to bed and the house is silent. The phlebotomist fussed at me because I am dehydrated and it took her four sticks to get the iv in. She always gets me on the first try, even when I am dehydrated. Jeff picked up lunch for me so when I got out of the appointment at 2 pm. I am so grateful for this man in my life. I came home instead of going back to work because I was crying too hard from grief about Dad’s death. I came home, turned on my laptop and it told me the Start Up Disk is FULL and it wouldn’t work. I spent three hours lying in bed, clearing files from my computer to try to get it to work. THREE HOURS. I started to write this blog piece, trying to...

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