Saturday, May 11, 2013

World Lyme Protest Day/Weekend and My Body Doth Protest

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...

The pain and fatigue is pretty bad today. I'm not even wearing a Lyme awareness bracelet. How I wish I could have been somewhere today, spreading the word. Heck, I wish I could've been enjoying the company of my kiddos. So... In honor of this weekend's events, here is a nice pictorial upload to help spread Lyme awareness!

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.

 If you need more information, talk to a Lymie. Trust in what they have to say. Visit or MDJunction's Lyme Support Group. Find a local support group in your area. Just do something.

Keep the faith guys and please educate yourself! The IDSA and CDC won't do it, so we have to.

Peace, love, & cider mugs...

Thursday, May 9, 2013

Sitting Here Resting My Bones...

You know, no matter how strong my conviction is to update more regularly, something always tends to get in my way. Call it procrastination... Call it Lyme brain... Call it what you will... I'm trying my best, and I pray you'll forgive me for the lag-time.

I've had a few big gaps lately. I had signed up to go on a 5-day field trip to St. Louis with my oldest mini-warrior early in the school year with hopes that I would be much further along in my treatment. Well, the time came and I wasn't nearly where I would have hoped to be, physically speaking, but I had already committed.
Gator at the Arch!

Suffice it to say, I was a bit overwhelmed with everything. But it was so worth it. I had a fantastic time with my girl, and the two choirs she is in walked away from a national competition with a silver and a gold.

Here are a few more highlights in pictorial form for ya:
We saw Million Dollar Quartet at the Fabulous Fox Theater! It was amazing, and the kids (about 70 of them!) all learned a bit of terrific music history.

We went to Six Flags. Yeah. It rained that day. My brand new shoes on top, Ab's brand new shoes 100% soaked with her poor feet wet too!

While we were doing our sitting and finding shelter from the rain, we got caricaturized!

We hit the Old Spaghetti Factory too. No one mess with Gator and her pasta!

I had to take some serious breaks and was so glad to see all of the "free" time scheduled in to the itinerary. When the kids hit the pool (and the other chaperones sat and watched) I hit my room to rest. The day we went to Six Flags I was the one who sat as much as possible. Long story short, I did what I had to so I could do my duties as chaperone and not completely bottom out.

That was a week-and-a-half ago or so.
A few days ago... Well...

I chaperoned my middle mini-warrior's 2nd grade class trip to the Milwaukee Public Museum. Oy. Did I not realize that meant WALKING? Holy cow. Let's just say I have crashed early for the past two nights, with ongoing leg pain (pretty severe), feet pain (also severe), headache, etc., and am kicking myself for creating a busy life these last few weeks.

And... a few pics from that escapade...
"Not sure what to think, but I will eek a strange smile for ya Mom!" In the Butterfly exhibit. Good times.
Mom got some one-on-one time with some, too.
Getting more used to it...
Oh! And let's not forget the glacier! Doesn't she look like a natural explorer? Go Mater!
HOWEVER... I also don't regret it. I mean, I can't stand the thought of being that absent mom. It's not in my DNA, and I'm not about to start neglecting my kiddos now. Especially not when they are going through a tough time too. So we get out there, we fight, we fall down, we get back up, and we do it all over again.

Until next time... More on the essential oils... Promise.

Chins up and keep the faith.