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I Never Thought I Would

Posted on May 19, 2013 in Blog |

Day 19 – May is Lyme Disease Awareness Month Things I never thought I would never be doing five years ago: eating almost all organic food saying “no” with no guilt considering coffee enemas drinking green smoothies trying to figure out computer software that used to be “simple” losing so many friends and being ok with that writing my second book scheduling laughter time every day scheduling meditation times giving presentations about Lyme disease participating in protest rallies against the Infectious Disease Society of America taking extra time to play with my puppies because it makes me feel good eating raw, unfiltered honey daily surrendering to fatigue without much guilt – coming home from work at 1 pm to rest laughing louder than I used to because it feels so good to laugh going without makeup for weeks at a time figuring out which method is the best way to detox my body – lemon water, Epsom salts, sauna . . . having two bumper stickers on my car that say “Eat More Kale” and “Sheldon for President” wearing no jewelry but my wedding band spending an hour every two weeks dispensing pills taking 50 pills a day and being grateful for every single one, knowing each has a specific healing task going low gluten, low dairy, low soy, low sugar; willingly inviting 100 people with Lyme disease to my house to celebrate our healing adamantly encouraging people to challenge their physicians and demand the correct testing for Lyme disease and co-infections Wearing lime green clothing Co-infections of Lyme: Erlichiosis, Mycoplasma, Bartonella, Babesia,Protomyxzoa Rheumatica, Colorado Tick Fever, Rocky Mountain Spotted Fever,QFever Share...

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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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Willing to Go to Any Lengths

Posted on Apr 14, 2013 in Blog |

April 14th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth Willing to Go to Any Lengths. When I started treatment, my physician warned me that my life needed to change. It had already changed so much I didn’t really know what he meant by that statement. I was already so exhausted and in so much pain, I couldn’t imagine how much worse my life could get. As Yolanda Foster mentioned in her recent speech, ‘meeting Mr Herxheimer was a rude awakening and probably the worst date I have ever been on.’ What I did understand was that my number one goal needed to be healing. And I knew that I was willing to go to any lengths to heal. My physician gave me an idea of what to expect, emphasizing the amount of rest I needed. Luckily, I was able to make some major decisions quickly which I believe were an integral part of my healing. #1 – I stopped going out of the house after 5 pm. I knew when I got tired, I tended to fall easily. And 5 pm seemed to be my bewitching hour. So I committed to staying home where I was safer. No evening activities for me. #2 – I gave myself permission to attend a maximum of one activity each weekend. That activity included: grocery shopping, having coffee with a friend, a movie with Jeffrey, going to the farmer’s market. One activity each weekend. MAXIMUM. #3 – when I was tired, I rested. My physician reiterated the importance of rest. ‘If you don’t rest, your body cannot heal.’ I took it to heart. I spent a lot of time on my bed. Resting meant lying completely vertical; not just sitting on the couch. Resting meant that my head and heart needed to be level with one another. It made a difference. #4 – Say no without a need to explain the no. I was able to decline invitations more easily and readily without feeling an obligation to explain why. This left me with more time to do the things I wanted to...

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Riley – A Day Later

Posted on Feb 4, 2013 in Blog |

It has been just a little over 24 hours since our beloved dog’s death. I feel a bit of an obligation to update everyone for a few reasons: 1. You have lifted our family in prayer so high and so strongly that I want you to know it is helping. Prayer makes a difference for me. And I thank you for this gift. 2. I have been writing as a therapy to get through this grief, but some of my writing has actually created more pain for some of you. So I need you to see how I am working my way through my grief to the other side so you can as well. 3. I do not want you to think your words have gone unnoticed. I need to validate that everything everyone has said has made a difference and aided in our healing. No matter what it was, it has helped and is appreciated. 4. I also want to answer some of the questions asked and to address some of the suggestions. First off, THANK YOU. For every note, flower, card, text, cupcake (coming tomorrow), candy bar, cup of tea, weepy phonecall, instant message, email, hug, and personal visit brought to us in just this short amount of time. Literally, hundreds of people have connected to us and I am in complete awe of the strength of our friends and family. I have not responded to each one and I simply cannot. It reminds me of Preston’s death almost two years ago. I still have copies of every email, note, and text sent back then. Riley’s death is not on the same level as our nephew’s suicide. But the emotions are similar and I simply am overcome by emotion sometimes and literally don’t have the emotional or physical energy to respond. Some of you have said things that literally touch my heart so strongly that I cannot yet respond. I know I SHOULD respond to give you that validation individually, but I just can’t reach out yet in some cases. So please know your words and deeds are intensely appreciated. Some of you have been asking about...

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Shaking and Shooting

Posted on Mar 6, 2011 in Blog |

A month ago, I at my regular appt with my LLMD (Lyme Literate Medical Doctor), my symptom checklist on the Status Update form included: Back pain – Pain has actually worsened in past month, waking me again at night. Not complaining about the pain, just telling you. Fatigue – tired of writing this word down as a presence in my life. Fatigue is incrementally improved from last month, but still a controlling force. On the Improvement side, I had a reduction of inflammation throughout my body; a possible explanation for the pain as I was starting to ‘do’ more. That’s why I wasn’t ‘complaining’ per se. My physical therapist was ecstatic. She was seeing less calcification in my muscles. She was actually able to pull my muscles from the fascia on my body, something she hadn’t seen in 18 months of treatment. I knew we were making progress. As a result of the reduced inflammation, Dr. M implemented some more changes, focusing on these two symptoms. I’m just going to tell you about two of them here: Exer-Rest Bed – This is a new machine, aimed at helping patients who are unable (or unwilling) to exercise yet, like me. I haven’t been able to walk any distance, never mind thinking about my daily 3 miles from a few years ago. Anything with impact was out of the question. Three sessions a week, for 45 minutes a session, it sort of like jumping on a trampoline sideways, with no risk of injury or negative joint impact. The concept is to get the body moving like it’s exercising, without the risks; just the benefits. It works! Instead of coming home at 3 pm each day and going to bed, resting, I drive to his office for a 45-minute session. I get up from the bed and not only do I feel more energized, but I feel like the scarecrow at the end of the Wizard of Oz: I have a brain! The motion somehow increases bloodflow to the brain, improving my cognitive assimilation and processing capabilities. The first time I got up from bed, I felt exhilarated, exuberant, and elated. I...

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