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What We Need Our Friends and Families to Know

Posted on May 19, 2017 in Blog |

Patients with Lyme Disease or co-infections of Lyme Disease are NOT: lazy, faking, sensationalizing, imagining things; refusing to learn or grow, avoiding responsibility going to grow out of it crazy contagious; it is safe to hug us “just depressed”; if we are depressed, it is because of living with Lyme, not the other way around. Patients with Lyme Disease or co-infections of Lyme Disease ARE: physically ill actually, very ill overwhelmed and frustrated their body cannot work the way they need it to experiencing real pain, often excruciating unique in that we each present with different symptoms; no two patients are the same examples of what can happen to your friend, sister, cousin or boss who has been sick for a long time with no answers; we share our stories so others may find a shorter path to a correct diagnosis Patients with Lyme Disease or co-infections of Lyme Disease DON’T want to hear: You don’t look sick! Are you ever going to heal from this? (Would you ask a cancer patient this question?) But you seemed fine ten minutes ago. But I thought you rested yesterday. Oh good! Now you are better and you can go back to the way you used to live/work! Maybe you should see a psychiatrist. But you looked fine yesterday. I already told you this. Get a grip; there is nothing wrong with you. So what, I get rashes all the time. If this was real, the CDC would do something about it. I know people who have real problems. Are you sure you have a good doctor? When you are going to finally be rid of this thing? What time is dinner? Are you sure you have Lyme Disease? How can anyone have that many symptoms? Do you really need to take all those pills? Isn’t it time you get over this thing? Patients with Lyme Disease or co-infections of Lyme Disease NEED: validation they are truly ill and require treatment help accomplishing the simplest of tasks your love and your physical and emotional support to feel wanted your respect others to know we are not weak hugs loved ones to make...

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When It’s Time to Take a Break from Treatment

Posted on Sep 12, 2016 in Blog |

This past week marked my seventh anniversary of seeing Dr. Mozayeni: September 9, 2009 (9/9/09). Some of you may be thinking, “wow, 7 years. That’s a long time to be in treatment. Isn’t she getting better?” Yes, I am. It is important to note here that I was sick for 29 years before getting an accurate diagnosis. Treatment is not going to be a short-term easy fix. I sent him a quick note saying, “My first appointment with you was seven years ago today. Thank you.” He replied, “ Amazing how time flies. Thanks for your trust. We’ve been through a lot. And we have more to do.” I replied, “Honestly, I was thinking of going a six month hiatus, physically and emotionally. Grateful for the safe place to do this work, but I’m tired.” And without missing a beat, he suggested, “ You could come in every three months and focus for now on . . . “ I’m showing you this interaction for a few reasons: 1. It’s important to say THANK YOU to your LLMD. 2. It’s nice to receive a Thank You in return and the validation of the hard work I have put forth as well. 3. It’s important to be HONEST with your LLMD and tell him/her what is going on for you. 4. It’s amazing to have an LLMD who doesn’t skip a beat, who knows treatment fatigue is part of the healing process and suggests some options to you. Sometimes, it is ok to take a break from the forward momentum of active treatment. I have done this at several points in the past 7 years. 1. I published a book, which caused some consternation among some family members. It was a rough patch during which I became almost suicidal. Dr. M managed my emotional status and he backed off my meds a bit. 2. My 16 year-old nephew died by suicide. Suicide wreaks havoc and hell on the entire family, including extended members. It threw me for a loop, most assuredly. It also affected other family members who then dropped into horrible depression. I learned during this time that if...

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The Need to Connect

Posted on Sep 1, 2014 in Blog |

Robin Williams’ death highlights the need to connect . . . http://www.womensvoicesmagazine.com/2014/09/01/robin-williams-death-highlights-the-need-for-connecting/#.VASfKbxdWrg It has been almost a month now since news of Robin Williams’ suicide trended and overtook the news coverage. Every time I hear of someone’s death by suicide, I am brought back to the instant when my sister Gayle heard that her 16-year old son had shot himself. I am brought back to the instant when my niece heard that her little brother was dead. I remember looking into my other sister’s eyes at those two moments and wishing we could be sharing any other experience but this one. And yet, we knew we were inextricably connected forever as our linked arms lifted Gayle from falling to the floor as her legs collapsed. The moments that followed were similar to what the movies proclaim: hysterical mother, sobbing families, screams of “Why?”, stunned silence, hushed phone calls to friends and distant family, ‘making preparations,’ waves of grief, and insurmountable anguish drowning each of us as the minute hand ticked. We don’t know why our nephew shot himself. We don’t know why he wanted to die. We will never know. We just know the pain of life was too much for him to bear. And, he chose the only way he knew, in that moment, to relieve himself of that angst. I believe the same to be true of Robin Williams. Everyone can surmise, and assume, and ponder. But there is only one person who knew and, I believe, he is now with his Maker, relieved of his torment. In that moment, he chose the only way he knew to be free of the pain and anguish that was too much for him to bear for another minute, or even another second. Many people initially surmised he was on drugs when he died by suicide. As a fellow recovering addict, I believe he was sober. For me, living life on life’s terms was so much harder to do without the drugs and alcohol.   I was clean and sober the two times I considered dying by my own means. Robin Williams and I were close in time for our sobriety...

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Tragedy and Stress

Posted on Apr 15, 2013 in Blog |

I had my blog posting already set up for today, but given the tragedy at yesterday’s Boston Marathon, I felt it important to acknowledge the event and to link it albeit in a thin way to Lyme disease. My LLMD has noticed that most of his patients are highly empathic individuals.  We are FEELERS.  Our intuition is usually very good.  We get a “gut” feeling that often turns out to be correct about other people or situations.  This can often be very helpful when you don’t have much data to go on in a situation and you are trying to make a decision.  However, being highly empathic can also have its drawbacks. In tragedies such as yesterday, highly empathic people tend to collect that trauma and tension into their own bodies and some will even personalize the experience even though they don’t know anyone personally.  That creates negative energy that does not help healing.  It keeps the patient focused on negative emotions, negative actions. The tragedy is also a stressor.  While most healthy people can take the stressor and adjust to it, immune compromised patients cannot always do the same.  In fact, many of us can have the bacteria in our body for years, but it doesn’t manifest until a major stressor hits and the body can no longer battle the infection effectively. My Bartonella and Babesia started to surface again after I shattered my foot.  I spent 7 weeks in bed with a cast elevated above my heart.  That event stressed my body long and hard enough that I could no longer fight the Bartonella and Babesia.  Shortly thereafter, my symptoms increased and worsened. Most patients find their Lyme surfacing after a car accident, death of a family member of close friend, another medical health crisis. The stressor doesn’t have to be a bad event either.  It can be planning and getting married, graduating from college, buying and moving into a house, going to college, birth of a child. So what do I do to stay well during events such as this? I don’t watch a lot of TV.  I don’t keep watching the video footage over and over. I find some...

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Round 3

Posted on Mar 21, 2013 in Blog |

The title of this essay was supposed to be ‘REMISSION.’ Yep, I had my 3:30 Lyme doctor appointment where I found out the results of my third blood test for the Protomyzoa Rheumatica. Yep, one test away from REMISSION. Good news: the Protomyzoa Rheumatica is gone. Bad news: I now have a variant of the PR. Another protozoic son of a bitch. First words out of my mouth were, ‘Damn you!’ I had to qualify that as the Damn You towards the metaphoric protozoa bastard, not my physician. The old, don’t shoot the messenger thing. . . I actually usually prefer the F word when I am angry. But for some reason, today’s choice was Damn. Don’t worry, the F word has come out since. This is my third co-infection of Lyme disease. First, I conquered Bartonella. That took 22 months. Then, I conquered the Protomyzoa Rheumatica in 13 months. The current estimate for this variant bastard is 6-9 months. Again, another new parasite. Unknown protocol. So we developed one this afternoon. My physician is two for two on developing successful protocols so there is no reason to doubt him now. I am grateful (UNDERSTATEMENT) for his brilliance and his willingness to try. Not all physicians are as gifted or as willing. I’m pissed. I thought I was just disappointed. I’m disappointed and angry. I want to be DONE. I want to be WELL. I want to be CURED. Yeah, well, get in line, Sharon. Four years ago, my health was declining exponentially. No one could figure out what was causing all my ailments. My latest diagnosis was ‘Lupus’. Three years ago, I was six months into treatment with my very first hope that I might ‘get better.’ At that point, getting better meant not being bed ridden. Two years ago, my nephew committed suicide and I had a setback (for obvious reasons). But I was no longer bedridden. I could do more than one activity on some weekends. I was well enough to travel to Colorado. A year ago, I was a month into the new protocol and felt better than I had in five years. I am...

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