So yesterday and today (May 10 & 11, 2013) there have been events going on worldwide to spread the word about Lyme and other TBI (tick-borne illnesses).
I had an appointment with my attorney for my upcoming disability hearing at 11. I laid in bed, unable to get enough energy to rouse myself, until about 9:30. Dressed and fed, we all piled into the car for the drive. As soon as we got home, it was back to bed. Netflix offers me some great nostalgia when I'm in this predicament. Let's just say today's respite has a lot to do with this guy...
Here's praying tomorrow is better. Sometimes it's just not that easy being green...
Remember folks... Lyme testing is unreliable. Is this the mystery in the center of your issues?
Be aware that Lyme is the fastest growing chronic illness in the world. Wisconsin is in the top 5 endemic states in the country for Lyme disease.
Lyme is like that ugly sweater your Great Aunt hand-made for you... It makes you miserable and you just can't get rid of it fast enough...
It doesn't care how old you are...
In fact, it likes to invade whole families, congenitally.
It will take you places you never thought you'd go...
And leave you with something that becomes a part of you for months... (mine, going on 7 months now)
Lyme will make you subject your children to regular traumatic blood draws for monitoring their basic functions while on lengthy treatments.
Every day that you go untreated is like a ticking time bomb, ready to go off at the precise moment: the perfect storm.
When it does... you can't do anything but give in.
Doctors simply aren't taught the wretched realities of Chronic Lyme disease...
There's just nothing simple about this illness.
So please, if you feel there may be something to this illness and your mysterious condition, check out the rest of my blog here, watch Under Our Skin (you can watch it online for free on Youtube, or Netflix, Hulu, and other places), and get help finding a Lyme Literate MD (LLMD) to check you out. Remember that a Lyme diagnosis is CLINICAL and NOT reliant on blood testing as the tests for Lyme are completely insufficient. They produce false negatives around 60% of the time.
Remember, regular doctors (no offense, really!) do not have the training and know-how. Not even Infectious Disease docs. I've been to more than I can list right now. None of them found my Lyme. Now, after treating for over a year, even the CDC agrees that I have it. So it wasn't because it wasn't there, it was because they simply didn't know how to diagnose it. No matter how much you trust your doctor, it would be like asking an electrician to install your new toilet. They just aren't equipped and will probably diagnose you with something else.
Keep the faith guys and please educate yourself! The IDSA and CDC won't do it, so we have to.
Peace, love, & cider mugs...
AMEN Sista-daughter! Happy freakin mother's day, I feel like you did when you wrote this! Bleck!!
ReplyDeleteYou are very good with your words. No wonder you write on behalf of other people besides yourself. I am newly diagnosed, and I am seeking out all the info I can find. This post is great, and sums it all up so nicely, for regular foks like me ... thx for sharing, I will do the same. Together, we have to put a stop to the crazy mystery that surrounds this horrible illness. Keep on truckin'
ReplyDeleteHi Paige, thanks for stopping by. It reminds me of my need to update my blog! Keep yourself well. Make sure you are connected with others in the know. Praying for your healing and wellness! Lauren
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