When People Put You Down For Not “Looking Sick”…. :P

So how do you explain Lyme disease to someone who thinks you “look fine”?

“Imagine the worst flu you ever had. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you.….”

http://www.livinglyme.com/Explain-Lyme-Disease.html

So what does “sick” look like anyway? Hair falling out? Swooning on the sofa? Grey clammy skin? Unable to stand up? Most chronically ill people (including a lot of cancer patients, those with heart disease, etc and other “respected” diseases can look perfectly fine). There are those of us Lymies who do suffer from the above mentioned symptoms…these, and far worse. However for the functioning or semi-functioning Lymie not looking like you are suffering while you are suffering on the inside can be a challenge. To everyone around you you might sound like a broken record and people can get weary of the “unending troubles”.

To those of you who know Lyme sufferers; trust us folks we are weary too! We grow tired of how we must sound to you every time you ask us how we are doing. We hate that question because the answer usually involves the high points and low points of our day (which can change radically), one symptom being better while another one is worse… We know how we sound, we are much more tired of talking about our suffering than you are of hearing about it.

Also know that you are statistically more  likely see us when we are at our best, and those times when we “disappear” off the face of the earth for days, weeks or months at a time are the times when we more than likely are in fact swooned on the couch (tv remote in hand).

Please understand how lonely and isolating this life is for us. ( https://jeanvieve7.wordpress.com/2013/07/15/the-emotions-of-an-invisible-illness/ ) The toll it takes on us not just physically but mentally and emotionally. Some of us feel that we have even lost our humanity and who we are as people, and we want nothing more than to get back to real life.

( http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/  )

Trust us, this isn’t fun and we don’t want to be coddled or get undue attention, only understanding and (hope of all hopes) a cure.

Thanks for listening.

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Holidays Can Be Tough With Disease

Merry Christmas to all my fellow Lyme sufferers. And because many of us have come to just say “Lyme” as a blanket term for not only Borellia itself but also the bugs that come with it…Merry Christmas to the Bartonella victims, the Babesia hosts, the Mycoplasma patients….

Holidays can be hard for many reasons; You can’t eat the food. You feel in a fog and can’t engage with people. You are in physical pain. You are too fatigued to attend any functions. This just marks the end of another empty and wasted year eaten by illness….

I just want to send blessings and prayers to all of you. I wish I could personally encourage each of you and had the resources to meet all your needs.
What is getting me through is focusing on the reason for the season and knowing Christ came and humbled Himself taking on the limited form of man when He is an infinite unlimited God. I honestly do not think I could have made it through all these years of suffering physically, mentally and emotionally if it had not been for my relationship with Jesus. There is no other reason that I at 35, still single because of illness, and having had decades of lost years…lost experiences…and so much pain, can instead have learned to be grateful for suffering because I can now see that God has been more interested in who I am internally and the ministry He can give me because of my illness.
For that reason I feel blessed to have been chosen to be used in that way and to have grown so much wiser, kinder, informed, stronger, deeper and so much more.

Because of illness I will be an advocate of Lyme for the rest of my life and care and pray for all of you, and do as much as I can with my resources to raise awareness and help others.
Stay strong this Christmas Lymies!

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Things You (Probably) Don’t Know About Christmas

Awesome Christmas Facts you probably didn’t know from a man who loves Christmas more than anyone I know

Pure Imagination

I love this time of year, and I love collecting facts about the holiday.
My collection of Christmas facts started in 2000 when I started writing and producing an annual Christmas musical every year for a large church in my hometown of Seattle.  As part of the “pre-show” to keep the large crowds entertained before the show started, I would create a presentation sharing completely inconsequential but entertaining facts about this most beloved of all holidays.

Here are some of my favorites:

  • The celebration of Christ’s birth on December 25th did not become part of tradition until 320 AD, more than 300 years after His birth.

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  • A Christmas film classic, Miracle on 34th Street, was actually released in the summer of 1947.  It won Oscars for Best Support Actor, Screenplay, and Original Story and was nominated for Best Picture.
  • Alabama was the first state to declare Christmas a legal…

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