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Our Secrets – What’s Mine? What’s Yours?

Posted on Dec 18, 2015 in Blog |

I’m sitting on my living room couch with tears streaming down my face proving that I am tired, stressed, and emotional. I have a pretty good idea of what’s causing it, but it’s something I haven’t been ready to talk to many people. This is a BIG pity pot I am sitting on right on. In the 12 Step Recovery program that I participate in, one of our slogans is: We are only as sick as our secrets. I have been keeping this a secret and it’s making me sick. As most of you know, I started treatment for Bartonella, a bacterial co-infection of Lyme disease about six years ago. I finished treatment four years ago and have tested negative for Bartonella since then. SUCCESS. I then was at a plateau for a few months, undergoing more testing, trying to figure out why I was still experiencing many symptoms. I had originally tested positive for Babesia, a parasitic co-infection of Lyme Disease. Its symptoms are likened to malaria. This is when we discovered I had Protomyxzoa Rheumatica FL 1953, a parasitic co-infection of Lyme Disease. We were thinking that this new protozoa might be causing a false positive on the Babesia test. The protozoa had been discovered by Dr. Stephen Fry only a few months prior. Imagine just finding the parasite and then trying to figure out how to treat it or kill it. Look at how long we have known about cancers and the continuing search for a cure. Luckily, I have a brilliant physician who tried a few things and they seem to have worked. If all goes as planned, next week will be my last IV for treatment for the PR FL 1953 and the multiple variants that had taken up residence in my blood. Four months ago, I started developing new symptoms and other symptoms were worsening. That’s a scary place to be when you are supposedly healing. Dr. M sat me down and explained me that all my new symptoms were typical Babesia symptoms. He said the Protozoa didn’t give me a false positive. He reminded me of when he had put me on the...

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15 Minutes Just for Me (and You)

Posted on Dec 12, 2015 in Blog |

I should be Christmas shopping, either physically or on line. Instead, I am sitting in Starbucks sipping on a chai. My week started with surgery on Monday at 7:30 am and ended with staff resigning during my first hours back at work on Friday. I have a lot to do between now and December 24th. And none of it matters to me right now. I decided to come here to get some writing done instead of doing the necessary “chores” and sulking about it. This is my mental health day I think. Inundated this week with emotions and riding a roller coaster that I think is probably normal for the holidays, but it always seems to catch me off guard. My healing from this latest surgery has gone significantly better than the first procedure a few weeks back. But today, I woke up with a tingling in my leg and when I tried to walk, I was like a weeble (“weebles wobble but they don’t fall down”). It took some balancing. I finally realized this is the phase of healing when the other veins are trying to take the load of the vein that has been cauterized. So there is a little stretching and expanding happening. It’s a good representation of my life these past six months. I’m healing, but there is some wobbling happening. I have to get used to my new normal. It’s not good; it’s not bad. It just is. I got a huge response to my previous blog about hanging in there until the miracle happens. So I know I am not alone and you aren’t either. A lot of us are feeling stress and my friend E., who landed in the hospital with a heart attack due to stress, will tell you it’s just not worth it to let that stress take over. That’s why I am writing in Starbucks. I was stressed and couldn’t figure out a way to dispense with it. Writing is my go-to method. And I haven’t really written all week. Every day between now and New Year’s I plan to do something for myself that is stress-free for at...

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Don’t Give Up Before the Miracle Happens

Posted on Dec 11, 2015 in Blog |

It’s the holidays –  I’m just recovering from my second surgical procedure in two weeks. I’m sore and tired. My back hurts from sitting in an uncomfortable chair. I have purchased maybe 6 gifts and only 4 are for my own family. I am VERY behind in shopping and VERY behind in work tasks. I feel STRESSED. I came home from my first day at work this week and was exhausted from just four hours of work.  I spent the rest of today on FB just letting my brain waste away. Sounds like I have a chronic illness, doesn’t it? So, I am saying to you, IT’S OK. It’s ok not to finish everything. It’s ok to put up 1/3 of the decorations. It’s ok to go to bed early. It’s ok to eat light dinners. This also tends to be the time of year when we re-evaluate what has transpired in the past twelve months. For many of us in treatment, it’s usually followed with a heavy sigh, disappointment, frustration, and sadness. I got some not so great news a month or so ago (more on that later).  I was pissed off.  Sad. Mad. Defiant. Defeated. A year ago, I thought my next phase would take six months and i would be DONE. I was wrong. I am hoping to finish up this treatment protocol by the end of December. And, in January, I have to start a new protocol for another co-infection. I’m pissed.  Really pissed.  and really sad. But we didn’t know a year ago what we know now. I’ve killed Bartonella (bacterial infection) and I’ve killed Protomyxoa Rheumatica FL 1953 (parasitic infection).  And I’m going to annihilate this third one. So, you are tired. I’m tired. But we are going to keep going. We will not stop. We will continue to fight. But for this week, just go a little easy on yourself. Love yourself more. Drink more water. Sleep  more. Stretch more. And reach out to someone else who understands this disease.  It will help you both. Don’t give up before the miracle happens.  I have seen numerous miracles in my recovery and I...

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Another Bump in the Road

Posted on Dec 4, 2015 in Blog |

I ran into a woman at the post office whom I had not seen in almost ten years. I didn’t recognize her. She came to me. She was fashionable, perky, beautiful, wearing swanky glasses and third floor Nordstrom clothes. She asked me how I was doing and I swiftly avoided answering by asking her if she had grown her hair out. She looked how I wish I could look. Thirty-four years ago, I had my first bout of unexplained fatigue. Six weeks into my first semester at college, I couldn’t stay awake. I was exhausted. Could not keep my eyes open. I literally slept for 23 hours at a stretch. I was losing weight and obviously not attending classes. My parents brought me home and I underwent innumerable blood tests. I wish I had kept those test results. I just remember them saying everything was normal. There was no explanation for my intense fatigue. I stayed home the rest of the semester and returned in January, rested and feeling better, still with no explanation of why I needed so much rest for so many weeks. For the past week, I have had almost the same fatigue – sleeping 10 to 11 hours at night and 3 hours in the afternoons. And I can’t make myself wake up. I have had some of the worst pain in the past week as I have had in the past six years. I don’t know why. Doctor has some ideas and suggestions, but nothing is working as quickly as I want. The inflammation is back in spades at a vascular level. I had blood taken yesterday for the surgery I am having Monday and it came out like sludge, as it used to six years ago before I started treatment. While I can’t prove it, I know there is a connection between vascular inflammation and hyper-coagulability. I know the inflammation will lessen and the blood will thin as the barometric pressure rises and with the doctor’s suggestions. How can I explain how I feel to the woman in the post office? I have been battling this disease for decades. How do I tell...

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