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Sharon’s Annual Letter – a Little Late

Posted on Jan 7, 2018 in Blog |

Dearest Friends and Family, As I prepare to write each year’s letter, I reread the previous year’s letters. Rereading my 2016 letter was like reopening a fresh wound and rubbing salt in it. My grief has “improved,” lessening in intensity and frequency, but it remains constant. I have always believed that even our worst moments offer gifts, if not immediately, eventually. I know God is always with me, guiding me to my next growth opportunity. Work Jeff is continuing with Home Equity Builders (www.hebinc.com). We are readying for a big master bath renovation. I am continuing with www.myNeighborsNetwork.com. Gifts At the end of February, I was dreading the first anniversary of Dad’s admission to the hospital and the 26 days that followed. That same week, I started dreaming in images, something I have never done before in 54 years. It became so intense and obsessive, I bought some paint and brushes and try to paint what I saw in my dreams. I had never painted, drawn, or done anything artistic before that week. The entire month of March, through the first anniversary of Dad’s death, I painted. And I have not stopped. Nor have the images in dreams and visions. A friend saw my work and encouraged me to join our local Artist Studio. I did and then I participated in my debut show in the local art tour. I sold my three largest pieces and did very well. It was a fantastic start to a new passion. I have also completed commission works for individuals as far as Las Vegas, Nevada. You can see some of my pieces at www.sharonraineyart.com. I had two more successful art sales/shows in December. In the meanwhile, Jeff started perfecting his work with the camera lens. His favorite subject is a pair of bald eagles near our cabin in Maggie, VA. Though, honestly, I love his scenic pieces more so. He can capture birds in flight and sunsets on the pond. I think I have talked him into joining the local Artist group as well and participating in local events. Entertainment In September, Jeff and I saw Sting in concert at Wolftrap. Score...

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Miscellaneous Aids During Treatment

Posted on Dec 5, 2017 in Blog |

I am reprinting this chapter from our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners because i think it might help you develop your own Christmas list and your own “how to survive the holiday” ideas . . . Miscellaneous Aids During Treatment Sharon I used to believe when I got sick, I could go to the doctor, get a prescription, take a pill, and I would be healed of whatever ailment had inhabited my body. I used to believe a holistic approach to health and well-being was a nice thought, a possible avenue, but something that mostly appealed to those “hippies” or those with a lot of money to throw around. I used to believe organic food was another way to rip off the customer at the checkout line. And then I got the Lyme Disease diagnosis. Dr. Mozayeni, with his credentials and research strengths, advised me at my second appointment to go “organic.” Some of my blood work came back showing I had significant levels of arsenic in my blood. I completely understand the panic and desperation late stage cancer patients’ experience. I found myself willing to try almost anything to see if it would alleviate my pain and fatigue. I believe in traditional medicine and treatment protocols, but I also now believe a holistic approach is the only way to heal from a systemic, chronic disease. We have gathered a list some patients have found helpful. What worked for some individuals may or may not work for you. And works now may not work six months from now. The point is, if you want to try it, go for it. People are constantly asking me for the “secrets” to healing. There are none. It’s a combination of ingredients unique to each patient. These are items that were simply helpful during the healing process. They are listed alphabetically. Attitude – A positive attitude is a critical element in my recovery. Even when I’m not feeling well, I know it will get better. At the most difficult and fatiguing phase of therapy, I mentioned to Dr. Mozayeni that I was trying to accept “the new normal”...

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Imperfect Holidays

Posted on Nov 23, 2017 in Blog |

Five years ago, Stephen had surgery on his shredded collarbone the day after Thanksgiving. He was miserable that entire holiday. Another Thanksgiving, Joey had strep throat and Jeff stayed home with him instead of joining the rest of the family. We brought leftovers, but . . . One Christmas, a relative’s oven broke and the turkey was not cooked completely – some guests didn’t realize until they had eaten some. On our wedding day, the airlines canceled our flight and we had to rush to the airport to catch another flight. We were in the back of the limo eating our dinner with our fingers b/c the caterer forgot to include utensils. We spent hours in the Tampa airport trying to get to Ft. Myers. The Christmas before Stephen was born, I was on bedrest for ten weeks – I could only get vertical to shower every other day and to use the bathroom. On New Year’s Eve, 2014, Jeff’s dad died at 12:30 in the afternoon. On Good Friday, 2016, Dad died at 5:55 am. Not all holidays have good memories attached to them. Some can develop into funny stories later on (like our wedding day mishap). But some don’t. Sometimes a big family argument breaks out; sometimes you wonder why you are even surrounding yourself with this group of people. It’s all ok. A wise friend said to me, “Lower your expectations; raise your acceptance.” So Stephen was miserable that holiday. He was alive and his collarbone healed (with the help of a few screws and a plate). Joey healed from the strep throat. I can’t bring back our parents, but I can tell funny stories about warm memories I have of them. I can hang ornaments on my tree that remind me of our loved ones. Life goes on and we do the best we can with what we have. Today, I went to a fancy restaurant with a slipper on because I think I tore a tendon in my heel yesterday. I could barely walk. But I went and I had fun. Stephen wore one of Dad’s suit jackets to today’s festivities. In a weird...

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Lyme Savvy Book Giveaway

Posted on Nov 13, 2017 in Blog |

We have had quite a few new people sign up for our blog postings so I thought I would just touch base. I thought I would let you know that we give away a copy of Lyme Savvy each month to a lucky winner on Facebook in the Lyme Patient Raffle group. Lyme Advise is also currently doing a give away: https://www.facebook.com/lymeadvise/. I don’t know if you heard the latest, but Dr. Mozayeni has accepted a position on the ILADS.org board and he will serve as President starting in 2018! Exciting! https://www.facebook.com/pg/natcaplyme/videos/?ref=page_internal Share...

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Co-infections, Co-infections, Co-infections

Posted on Oct 27, 2017 in Blog |

In the past few weeks, I have talked with several newly diagnosed individuals. Three of them had never heard the word “co-infections.” Thus, they had never heard of Bartonella, Babesia, Erlichiosis . . . and the list goes on. It can be frustrating to educate people about Lyme itself. It can be doubly frustrating to bring them up to speed about the co-infections as well as Lyme. The amount of mis-information about these diseases is overwhelming. I encourage each Lyme patient to find a Lyme Literate Medical Doctor (LLMD) to help you navigate your way to health. And work with your LLMD as a team. One thing that drives me insane: when a patient has an appointment with their LLMD, they develop a new plan for treatment, and then the patient goes on line and asks other patients their opinion of the plan. If you still have questions about your plan, ASK YOUR DOCTOR! Do NOT ask a thousand people who do not have a medical degree, are not familiar with ALL the details of your history and current state. If you feel you can’t work with your LLMD as a team, find a new doctor. I encourage you to read articles from www.whatislyme.com, galaxydx.com, lymeadvise.com, igenex.com, and other Lyme savvy websites. In Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners, we cover many of these co-infections. I encourage you to read it. A note to the new readers: I originally tested positive for Lupus and Lyme. Better testing from Galaxy Diagnostics showed I was positive for Bartonella. I was then treated for Bartonella. And after that treatment, my next Lupus and Lyme tests were negative. It took a smart physician to figure out what I had and how to treat it. Share...

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8 Years Ago Today, My Life Changed

Posted on Sep 9, 2017 in Blog |

8 Years Ago Today: The First Appointment I lied on the 22-page “Complete History Form” Dr. Mozayeni asks all patients to fill out. I suspected if I revealed all of the symptoms I had experienced over the years, he would surely think I needed a psychiatrist rather than an LLMD. No one has that many symptoms without being a hypochondriac; even I had to begun to believe this. I focused on my major symptoms and denied the less compelling ones. I was very nervous at my first appointment with Dr. Mozayeni. Partially, because I couldn’t believe I might actually have Lyme Disease. If I did have Lyme, I didn’t want to have Aunt Betty’s outcome. And I didn’t want to have one more physician looking at my paperwork and giving me another incomplete, inaccurate diagnosis. My anxiety had reached a new peak. It wasn’t like getting a splinter in my finger. I couldn’t remember getting the splinter. I couldn’t see the splinter. I couldn’t get a pair of tweezers to excise it. I knew I felt pain and it kept getting worse. But there was no red, swollen, site with puss coming out. There was nothing to show a physician except my own perception and recording of symptoms. Even some of my lab work was faulty, skewing the puzzle more so. For years, I watched and listened as physicians provided little explanation and less treatment for pain that was increasing sometimes exponentially. Over those years, my anxiety increased, my defensiveness grew. I talked with other people, researched the Internet (not necessarily the best idea), desperately seeking answers. When I did receive a diagnosis, I thoroughly researched that condition, becoming as expert as a non-science major can become. But when I met new physicians and explained previous conditions, my knowledge base was met with skepticism and obvious discomfort. I found most physicians did not appreciate being challenged by laypeople. I discovered an ugly dimension in medicine. When the physicians could not come up with a plausible diagnosis or effective treatment, they did not like being put on the spot. They did not care for being challenged with the possibility they...

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