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First Day of Diagnosis

Posted on Apr 25, 2013 in Blog |

April 25th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth If you could go back in time and talk to yourself on the day of diagnosis, what would you say? The day I was diagnosed correctly, I spent two hours with Dr. M. I had filled out a 22 page form listing all my symptoms, medical history, etc. When I filled it out, I lied. I thought if I admitted to all of the symptoms I had experienced, I would be labeled a psych case. When I went into Dr. M’s office, he took the form and then asked me all the questions again. The problem was, I couldn’t remember which symptoms I had lied about and which ones I was truthful about. So I just told the truth. For the first time in decades, my symptoms were validated by a physician. In those two hours, Dr. M explained how one diagnosis was responsible for all those symptoms. I walked out of that appointment, got into my car and sobbed with relief. What would I say to myself knowing what I do now? 1. You are the luckiest woman; you just found the most brilliant physician ever. 2. Dr. M is going to HEAL you. 3. You are not going to die from this; you will not repeat what happened to Aunt Betty. 4. Be patient. This is going to take awhile. 5. It’s going to get worse before it gets better. 6. This is going to be the hardest thing you have ever done. 7. Start eating healthy NOW. 8. Start eating organic food NOW. 9. Start EMDR therapy for PTSD NOW. 10. Start meditating daily NOW. 11. Your anxiety is part of the disease. It will go away as you heal. Yes, really, it will. 12. Dr. M is going to explain A LOT of things to you that will take you forever to understand. You will retain only about 20% of everything he tells you and that’s ok. 13. Dr. M is your partner in treatment. Trust him. 14. Start searching for and bringing in puns...

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Giving Me My Dreams Back

Posted on Apr 24, 2013 in Blog |

April 24th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth Write about something I taught my physician or my physician taught me. I sent this note over a year ago to my physician, but thought it was a good marker for how much healing can happen. I haven’t felt this ‘present’ in more than a decade. It’s been happening over the past two weeks. It’s an adjustment, truly. I keep looking around and seeing the world with a new pair of glasses. I am starting to be present for conversations, I am literally seeing more clearly, I’m remembering more data and remembering it better. I am working more efficiently. It’s just all a lot of change, requiring some adjustment. I knew it would get better, but when it gets this much better, it’s a tremendous emotional adjustment. I spent twenty years thinking I was losing my capabilities (and I was); thinking I would never get it back. It’s taken a year, but I’m starting to get it all back and it’s overwhelming and humbling. To get it back at the same time as my first book comes out and working on this second book, it’s a bit more to take in than I realized. It’s all good . . . just change. And we know how the Lyme patients love change . . . Didn’t realize all the head trash I had fed myself to account for my losses. A few sessions of EMDR therapy and that will be gone. Whereas you have been able to move forward in incremental steps to make your vision come true, I was stuck for two+ decades. I could see the dream, but I couldn’t work the steps forward. Now, literally in two weeks’ time, I’m getting the energy and mental capabilities back in a huge rush. It’s like coming out of anesthesia; you go from pure silence and darkness to the full rush of sounds, sights, and sensations in a matter of five seconds. It’s just a bit much to take in all at once. To you, you are just doing your...

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Week In Review

Posted on Apr 22, 2013 in Blog |

April 22nd – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth Write a poem about Lyme Disease – I wrote this poem about two years ago. Week in Review Monday Four-week anniversary of nephew’s suicide; traveling through each hour as I did that day. Tuesday Final day of 22 month round of triple antibiotics to conquer Bartonella, a form of Lyme disease. I bring cupcakes to my physician. Wednesday EMDR therapy; I think I am better from nephew’s death. Bloodwork tests positive for Babesia, another form of Lyme disease, this one incurable. I threaten to bring my physician a green smoothie filled with spinach and kale instead of cupcakes. Thursday Anniversary of nephew’s funeral; my niece calls me and no one else. 28 year old Lymie friend found dead of a heart attack. Friday Seven injections in my back with 50% more medication than recommended to dull the pain. End of the month; first time I made not a single sale in my job. Share...

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The Roundabout Way

Posted on Apr 21, 2013 in Blog |

April 21st – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth I just re-read my very first blog posting in 2009 about my journey to get to the Lyme Disease Diagnosis. I thought it was worth reposting . . . . The Initial Few Weeks Note from Sharon: By verge of reading this page, you know that I have been diagnosed with Late Stage Chronic Lyme Disease and not Lupus. But the initial Lupus diagnosis is part of my story, so if you want to know the story from the beginning, we have to start with Lupus this past July. . . . . July 17, 2009 Two days ago I was diagnosed with Lupus. Auto-immune is about all I knew about then. I left the endocrinologist’s office with strict instructions to see a rheumatologist as soon as possible. When I walked out of the office, the sun was beaming down, humidity was low, so the warmth wasn’t suffocating. I called my sister, the nurse, and told her. “I am so sorry, Sharon,” she offered to me. “What’s your ANA ratio?” followed quickly afterward. Yep, she’s a nurse. She needs facts, details. “1:340 with a speckled pattern. It means I’m in an active phase of Lupus,” I answered. I didn’t even know what I was saying; rather just regurgitating what I was told. I gave Gayle the other data I had and I answered a lot of her questions with “I don’t know.” It was a starting point. I called the rest of my immediate family and gave them the information. It’s still not sinking in. I find myself smiling. This means I don’t need back surgery!! I think this may be the best news I have had in weeks. It’s strange to think that Lupus is a better reply. But I will take it for now. So God, what’s my lesson with Lupus? Silence July 18th, 2009 I went to a meeting this morning and shared my diagnosis with the group. When I say, “I just found out a few days ago that I have Lupus,” it feels as...

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What I Don’t Have

Posted on Apr 20, 2013 in Blog |

April 20th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth I woke up this morning frustrated because the bottom of my feet still hurt when I walk. That’s an old symptom for me; one I had when I had Bartonella; that and itchy ear canals. Weird, huh? But yes, they are both symptoms of Bartonella, a co-infection of Lyme disease; two symptoms that had disappeared the past year and a half until a couple of months ago. So, of course, immediately, I panic and think I have relapsed that. Then I remember that’s the PTSD my physician keeps having to remind me of. So, just move on for now and mention it at the monthly appointment. But it got me thinking . . . It has been 3.5 years since I started treatment. So here are the symptoms I still have but significantly LESS or close to ZERO: Weakened auditory processing Adrenal gland imbalance Back pain Balance Issues Clumsiness Itchy ear canals Sore bottom of the feet Heat sensitivity Joint pain and swelling Memory loss Noise sensitivity Peripheral neuropathy Rashes Thyroid issues And here are the symptoms I DON’T have: Major anxiety Arsenic poisoning Difficulty taking a full breath Blurred vision Persistent, non-productive cough Daytime sleepiness Eczema Loss of executive functioning Unexplained fever, low grade Fine motor skill impairment Gallbladder disease Hair hurting Hair loss Headaches Heart palpitations H. pylori Insomnia Joint stiffness Migraines Pancreatic tumors Plantar fasciitis Ringing in the ears Scalp lesions Misaligned SI joint Recurrent sinus infections Significant muscle twitching Stomach atrophy Teeth dying inexplicably Urinary incontinence Vertigo Word searching I am healing. Share...

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