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Put the Lime in the Coconut

Posted on Oct 23, 2009 in Blog |

Originally posted October 23, 2009 Two Sundays ago, I couldn’t get down the stairs to do the day’s laundry.  Even trying one step at a time, left leg going first each time, it just wasn’t happening. That’s the first time I surrendered to the stairs.  I have a feeling it won’t be the last. Last weekend, it was my dad’s 80th birthday.  We had meals together, family photos, and time spent just talking.  It was rainy and cold all weekend.  I found out how much pain those two natural elements bring to my knees and back. I had also started the antibiotics on Friday, the 16th, one day after Dad’s 80thbirthday.  Everyone has been telling me that if I feel pain while on the meds, it’s a good sign.  It’s like the meds go in after the bacteria and chase them out, right now from my knees and back.  And these bacteria go nuts like a hornets’ nest.  They’re in there zinging, pinging, zigging, and zagging, trying to find new places to settle in.  in the meanwhile, all that activity causes even more pain for the host (that would be me).  So while the pain has been worse, I’ve been wearing a bigger smile. Now, why would I be smiling when I am in worse pain than before?  Because I know it’s working.  I am starting to win this battle.  I am getting rid of some of those buggers.  And eventually, I know I will get better.  That one statement:  Eventually, I will get better is something I didn’t know for at least six years.  I thought I might make it into a wheelchair before my 78 year old mother.  Now, I know I may, but it’s unlikely and if it does happen, it will be only temporary.  I have hope.  I have vision. After donating 15 vials of blood last week for tests, I had to go back today and give one more; one of the vials had clotted in transit.  Advanced Lyme can cause “sticky blood.”  That’s what I have.  Let’s hope this vial stays fluid.  Yes, I am taking something for the sticky blood.  Yes, I told...

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The Initial Few Weeks

Posted on Oct 21, 2009 in Blog |

Originally posted October 21, 2009 – 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, simply 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 though the dis-ease is out there, separate from me.  I keep thinking it hasn’t sunk in yet. Many of my friends have responded with, “I am so sorry.”  And I just emotionally disconnect from them.  I don’t want to be in that sorry category.  I want to Live with Lupus, not Suffer from it.  By God’s...

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