I’ve been “unwell,” “ill”, “in poor health” and undiagnosed for four years now*. The purpose of this blog is to document my journey through chronic illness. I want to share what has worked and what hasn’t worked in order to make sense out of what I’ve been through and am going through. If you are suffering from chronic illness, I hope you will find something useful here.  I’m creating this blog in a desperate attempt to save myself, and to affirm that I am worth saving.

*Status update: Diagnosed with Lyme disease August 11, 2014.

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7 thoughts on “About

  1. I have been reading your blog and while I cannot relate my husband can. My husband has been quite sick for a year now but looking back it has really been for several. We too started with various specialists and treatments with no result. We have fought candida, parasites, auto-immune disease (and so much more)and are now on to Lyme. He was able to see a clinic in CA that diagnoses and treats in a very different way. Two weeks ago we found out he has advanced Lyme via this provider. The treatment is expensive but the success rate is 94% or higher. Of course all lab tests have come back negative as we suspected they would. He has had a lot of the feelings that you describe in your blog of hopelessness, frustration, missing his old life, to severe depression and anxiety and suicidal thoughts/ attempts. Please know you are not alone and your life IS worth living and saving and fighting for!! I hope that my husband can make it through this…. We have “good days and bad days” …. Today happens to be a bad day. As the caregiver/wife I can tell you how hard it is to see the person you love change not just in their health but mentally and emotionally. I will continue to read for your updates as to how you are doing. Best wishes, Hugs & love

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  2. Hi. I do not know how I came across your blog today. I was on Lyme group on Google and followed a link to some well-written, brief Lyme updates from ILADS conference; then I somehow pushed a button and surreptitiously ran across your blog. I am sitting in Corte Madera’s Book Passage, and am supposed to be working on my memoir about becoming a mom to my 13-month-old niece, overnight at 45, but as way leads on to way, I began to read your blog. You, as I am pretty sure you do know, are a WONDERFUl, WONDERFUL writer. This blog has helped me more in the past few minutes to connect with someone in the Lyme world like few other things or people have. Thank you. My niece is eleven and was diagnosed with Lyme in late February. Long story, but I have been thinking I need to begin a blog about this nefarious visiter. (I say visiter, because surely she will eradicate it.) I thought I had Lyme, too. And I may have or have had. For several years I was noticing myself slip away from me. I felt like I was going insane at times, and I could not keep my emotions stitched together or my impulse to say what was on my mind. My brother, whom I adore, is a country doctor back in Kentucky, and he diagnosed me as simply depressed. I know depression was a symptom, but there seemed to be more to it than that. I did not have any muscle aches. I did have extreme exhaustion that I chalked up to menopause. My doctor, who at the time was not Lyme literate but who since them became Lyme literate, thought hormone replacement therapy would help. She tests my adrenals: blood work came back that I was depleted of cortisol but high in DHEA. Something wacky she thought. My anxiety was so high I had to trick myself into going to work. I have no saving, so I could not slow down. I have to make a living for my daughter and me. I also have to pay the Lyme piper monthly. The story continues as you might imagine. All this is to say, please do NOT stop writing your blog. I will recommend it to people if you don’t mind. Your voice is as good (if not better) than Annie Lamott. You writing is: authentic, accessible, just the right amount of self-deprecating,never overreaching for sympathy but does warrant the readers deep respect. I am so sorry you are so tired. I know it must be hell to write under the circumstances you are in, but hey, Laura Hillebrand, who wrote Unbroken, did so with a horrible case of fibrolyalgia. The Lyme world needs your observations and research, your tips and taps. Regarding your son, I really hope you will have him tested for Lyme; his symptoms speak loudly of something going on with him that could be bacteriological or mold related. I am here listening. I am not gay, so please do not misread this response; I only want you to know I appreciate your voice, experience and courage. Feel free to email me anytime. You have inspired me to launch a blog for parents of kids with Lyme. Thank you for what you have shared. I hope you will get back to it. (PS no time to edit this. I have to get to my writing assignment!)

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  3. Of course Lyme is real. FFS. I want to punch HARD any medical person who says otherwise.

    I was raised in a rural town just to the north of Lyme, CT. We all had Lyme at least once, including our farm dog and the livestock. No one knew for awhile what this thing was, this bizarre illness that was crippling and killing and damaging brains. Lost quite a few folks in our town to it. When I got it the first time, it had only just been discovered that antibiotics had some success in treating Lyme. I was very lucky and was quickly cured both times. My mom was not. Her Lyme went neuro and 25 years later she now has nearly 50% brain loss. I’ve seen the brain scans. She can no longer care for herself. My best friend is in her second year of the Lyme battle and it’s scaring the hell out of her. And me.

    It is so very goddamned real. East coast doctors are way more versed in Lyme.

    I am so sorry for what you are going through. So very sorry.

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  4. Super Lyme and Chiari blog!!!

    Those without such issues cannot begin to imagine how difficult it is to articulate such an experience, or find the energy (or residual caring) to do so for others.

    I wouldn’t wish health issues on anyone, including skeptical medical professionals. However, I would ask that if they aren’t willing to study the full range of scientific studies, not just the “objective” (agendized) ones that happen to support their bias, that they engage in old school medicine and do what healers have done for millennia: LISTEN AND CARE before passing judgment.

    Neurolyme is VERY real and life altering, and someone is benefitting from ignoring the problem. Perhaps not all patients have it, but when the medical profession ignores the symptoms, self diagnosis (and often treatment) is all we have.

    Blame global warming, blame too many prey and not enough predators, blame mosquitoes, blame Plum Island, blame proximity to wild areas, blame STD’s, blame ANYTHING but start taking this seriously, scientific community and government, before you or your families ARENT diagnosed and treated, either.

    Thank you for graciously allowing me to use your space to vent–glad I found you, and my best wishes to you for healing and peace.

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