I was thinking this evening as I made a post about having extra pain and inflammation today because my mast cells are high (Lyme complication). It made me think that anyone who saw me earlier today would be confused by this post because I functioned well at work today, and of course I “looked fine”.

As any Lymie knows many of us do look fine and can even speak and act fine despite pain, fatigue, brain fog and the other myriad of symptoms that might be plaguing us. If I had a dime for every time I could have whined and complained and didn’t….. 

that said,  I would like to do a post featuring the faces of chronic Lyme (that’s where you come in); For anyone who is comfortable to share a headshot and a short bio (how long you’ve been sick, your symptoms and how you function and maybe some negativity you have experienced from others). I will leave that up to your discretion. 

Since WordPress won’t let you share photos in comments you can share your photos and stories with me on my Facebook Lyme page: My Color Is Lyme. You can post in comments where I will. E sharing this blog post, or message me.

I am looking forward to your responses to help raise awareness and understanding. 💚

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3 thoughts on “I want to hear from you!!! A call to all Lymies

  1. I was only diagnosed with Lyme and co-infections in 2015 at age 67 after lifelong struggles with depression, anxiety, and a number of strange symptoms, that no one ever questioned…except to continually prescribe antidepressants and a number of other psychotropic medications. In that era, no one questioned anything, so neither did I. I was misdiagnosed with Fibromyalgia and Chronic Fatigue in 1995, and it was not until 20 years later that I was to be officially diagnosed with Lyme and co-infections. In 2006, I suffered a rare form of non-Hodgkin’s lymphoma. However, I sailed through the treatment…or so it appeared, and people were very responsive. In 2010, after an attack of Shingles, all kinds of physical symptoms began manifesting, including the loss of my solo singing voice. Aside from recently gaining 28 pounds, I LOOK fine, so few individuals know how to respond to me, and I’ve lost relationships because they either want to fix me and cannot, or they cannot handle my suffering. I receive skeptical looks from the conventional doctors, if they even react at all, when I inform them of the Lyme. Because the CDC refuses to acknowledge Chronic Lyme, that mentallity unfortunately trickles down to the doctors and to individuals who just refuse to take it seriously. After all, it’s not them…and I look just fine. That is until I might have the courage to show them the horrible petechial-like rash on my legs, the only outwardly physical manifestation of my disease…a Lyme co-infection I think. Unfortunately, there may be no remission for me, as I don’t have enough funds to treat; I have 7 genetic mutations that make it almost impossible for me to detox; I’ve been undiagnosed for so long; and the damage to my immune and nervous systems appears too great.

  2. I’d love to participate. I am trying to distance myself from keeping the “identity” of illness so I’d love to share my story, but probably not my pic on the Fb page. I’m in the middle of some major cognitive overhaul. 😉 Thank you for the invite – I hope you get lots of responses!

    • Not too many so far. I guess I am really trying to do the “faces of Lyme” to make a point that most who are suffering don’t look sick.
      That said I totally understand if you don’t want your picture posted, I hate how my face looks puffy and swollen most of the time and I won’t let people take my picture

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