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Your Physician is Your Partner in Healing

Posted on May 5, 2016 in Blog |

In Lyme Savvy, we wrote: “The most important thing to remember during the appointment is your physician is your partner in healing.” One month had been particularly bad for me and I couldn’t figure out why. Dr. Mozayeni started going through my medication list. “Did you take ‘Treatment B’ every day?” Blindsided. I had completely forgotten to take the medication. Knowing honesty and mutual trust is a huge factor in the healing process I replied sheepishly, I replied, “No, I totally forgot.” “Well, there you go. Titrate back up on it and you should start to feel a difference,” he replied. Through the rest of the appointment, I was silently beating myself up for not remembering. Finally, Dr. Mozayeni said, “Look, you forgot to take it. It’s over and done with. There is nothing you can do to change the past month. It was a bad month and now you know why. So move forward. Start back on it, and we’ll see how you feel in a few more weeks.” Over and done with. Forget the shaming, and move on. (this piece of advice is helpful in many other aspects of life as well) That’s called teamwork. At the same time, if you disagree with a direction the protocol is taking, you need to speak up. If you don’t believe the next phase will work, then it definitely won’t. Do not waste your time and energy on something you don’t believe in. If a physician is judging me during the time that I am paying him, then I need to change doctors. If I don’t feel safe in being honest with my physician, I need to change physicians. HOWEVER, this does not excuse the patient from being compliant. There is a big difference between making a mistake and being non-compliant. If you don’t plan to follow through on the treatment protocol that your physician has set forth, then don’t come back. Find someone you feel you can work as a team with. It’s not worth it to waste anyone’s time. Remember, your physician should be your biggest ally. He is on your team. He wants you to heal....

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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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Non-Physicians Offering Their Opinion of Your Condition

Posted on May 2, 2016 in Blog |

May 2, 2016 – May is Lyme Disease Awareness Month. I am pulling quotes from our about–to-be-released book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I apologize for the delay in its publication. We had planned to be in print by May 1, but my father’s sudden illness and subsequent death pushed back the production schedule. “Most people who will have an opinion about your condition are often non-physicians, with no medical expertise, who think somehow they are competent to assess you medically and make conclusions based upon that assessment.” – Dr. B. Robert Mozayeni, Lyme Savvy I love this quote from Dr. Mozayeni. It sums up in just a few words, the idiocy and gall too many people around Lyme patients have. They don’t seem to have the same opinion about patients with cancer or diabetes. But Lyme patients often are seen as malingerers, lazy, over-emotional, deviant drug seekers – or some combination thereof. It’s not even the point of just seeing a physician. Do you go see an internist for a brain tumor? No, you see a neurosurgeon. You need to be assessed by someone proficient in the field, a specialist who sees Lyme patients every day. Dr. Mozayeni reminds the patients and their families that the only person who should be assessing your medical condition is a Lyme Literate Medical Doctor. It is also important to ask our physicians to start looking again for causation; not only to give us something to mask the symptoms. This is a key to healing. And too many physicians are being trained in merely resolving symptoms without looking for causation. It seems to be up to the patients to demand that deeper query. It took me 29 years to find Dr. Mozayeni, to find a physician who acknowledged my symptoms as real, explained their cause and showed me how we would rid my body of this horrible disease. Remember to keep the reality of your disease based on the assessment given to you by a Lyme Literate Medical Doctor (LLMD). Ignore what your brother in law, or neighbor, or co-worker might think. They are not the specialists in Lyme...

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My Writing Space

Posted on May 2, 2016 in Blog |

First seating at my new writing space at the cabin and it feels perfect. This space that is just mine occupies a quarter of the house. Jeff is ok with that. He knows how much this space settles me. It sets me right. I purposely created this room to be a space of happiness, contentment, and ease. I hung photos, counted cross-stitch pieces, pictures, and art that make me smile – that bring me joy. The room itself has a queen size bed for guests and a comfortable chair and ottoman when I want to read or work from my laptop. And then I have my writing spot, my writing space. First, let me tell what it is not. It is not a space to pay bills, to file papers, or do busy work. I purposely keep no drawers, no storage beneath. I do not want any energy to fill this space that will not help me create. I also purposely kept this space from connecting to the internet, again to decrease my distractions. By design, it is a small light-colored wooden table, to keep me focused on the Mac screen before me and not all the things around me. I have a propensity for collecting meaningful things (aka clutter). This space is a strong effort to reduce the clutter and keep my focus clear. Above my monitor hangs the first art I purchased in 1988 with Mom, a fiber piece entitled Rope Trick. On my desk, I have a salt lamp offering healing energy, a tissue box for the tears that inevitably come when I write, and my hat from Turks and Caicos to remind me of the #vacationofalifetime. Carol and I found our hats in a small touristy store, the first and only one we visited. I had been looking for a comfortable hat for years. I am picky about my hats and, as such, I do not wear them often. The only two places I have found the other perfect hats were in Naples, Florida and the gift shop at White Sands, New Mexico. I find it amusing that I have only found my perfect hats...

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The Duration of Your Illness Does Not Determine Whether or Not You Will Heal

Posted on May 2, 2016 in Blog |

May is Lyme Disease Awareness Month. I will spend this month pulling quotes from our about to be released book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I apologize for the delay in its publication. We had planned to be in print by May 1, but my father’s sudden illness and subsequent death pushed back the production schedule. “It does not appear the duration of your disease determines whether or not you will heal. This is great news for patients who have been ill a long time.” – Dr. B. Robert Mozayeni, Lyme Savvy   When I saw Dr. Mozayeni for the first time in September, 2009, I had been sick for 29 years without reasonable explanation or viable treatment. Having been sick for so long, I almost thought I would never heal. I had seen too many specialists, developed too many rare conditions. I had almost given up hope. After 19 months of treatment, I tested clear for Bartonella in April, 2011 and have tested clear for the five years since. I am still battling Babesia, which at this time is incurable but treatable. This past weekend, I planted herbs and annuals in a small garden. My hands had not touched dirt since 2008 I think because of the vast fatigue these co-infections cause. Healing is happening. I was the typical “List of Symptoms” patient. The simplest way to present my own history to you is to show you how many different types of physicians I saw, some of the major medical events that occurred, and of course, the various diagnoses I was assigned. I know many patients can probably relate to this snapshot. Physicians I saw for symptoms Often, I saw more than one each of the following: Cardiologist, Chiropractor, Dentist, Dermatologist, Endocrinologist, Gastroenterologist, Internist, Neurologist, Gynecologist, Neurosurgeon, Ophthalmologist, Optometrist, Oral Surgeon, Orthopedist, Osteopath, Otolaryngologist (ENT), Physical Therapist, Psychologist, Psychiatrist, Rheumatologist, Surgeon, Urologist Sharon’s Symptom History 1981: viral meningitis, unexplained fatigue and exhaustion 1984: diarrhea, abdominal pain, loss of appetite, mouth ulcers, grinding teeth/jaw pain 1988: elevated gastrin levels 1993: depression and anxiety 1995: migraines 1996: h.pylori infection 1999: shattered right foot...

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