Thursday, December 17, 2009


So you can definately say that I need some inspiration as of late.  All of these ups & downs . . .  I felt pretty bad yesterday, that's why I didn't write.  But today, I wake up and all is new.  Very small amount of pain in my body, I have some energy, and I don't feel like dying.  Not yet anyway. 

I joined this online "support group" for people with Lyme Disease, MDJunction.  Since treating Lyme Disease isn't cut n' dry, you have to be doing your own research.  You have to be on top of things in the world of Lyme and it's discoveries or else you're not doing enough to get well.  The people on this site are going through the same thing I am.  Some have had it for 40+ years and are still searching for their cure.  Some are just finding out today.  Some are hoping it's Lyme Disease instead of that ALS diagnosis they just recieved.  SCARY! 

I have been "hovering" at that that site since October, but finally started to take full advantage.  I am working my way into the group.  I am supporting people and they are supporting me.  Like me, most everyone around them have no idea what it's like for someone with this disease.  Yes, I may look ok on the outside, I think the Lyme saying goes "But you don't look sick".  And when my friends see me, it's only on my good days.  So those days that you don't really hear from me, it's usually because I am curled in a ball in my bed or in the tub for relief.  But it doesn't mean I am not sick.  The people at this forum realize this.  I have a lot of crazy, strange symptoms that make me cry.  They scare me so bad.  And they are things I can't even explain to my husband.  Like yesterday, I was in the tub.  I was looking at a bottle of face wash.  Trying to read the back of the bottle.  There were these waves coming over it.  I closed my eyes & looked again.  They were still there.  I thought maybe it was the heat from the tub.  Giving off heat.  Like on a super hot summer day looking down the road at the asphalt.  It scared me.  Then it went away. 

Anyway, I wrote to this group looking for an answer yesterday because lately things have been a little rough again.  With the return of the neurological symptoms.  I explained my symptoms & how they have been gone for a couple of months & are suddenly back.  Is this a herx or is it indication that my treatment is failing???
Finally after waiting all day.  Someone writes me back.   It was beautiful.  It was the inspiration I needed.  I removed his name from the bottom because even though this was a public post, not sure if he wants me to repost it elsewhere:

"~~~Yep sonyafly.This dis-ease surely is a freak out.

~~~What you are describing is classic Lyme and only the tip of the iceberg of possibilities.
~~~Expect the unexpected and you will have a lesser freakout.
~~~Your symptoms will come and they will go,wax and wane,and go up and down like a roller coaster.  New ones will appear.Don't be alarmed.This is "normal".
~~~Just when you think your out of the woods you find yourself in a forest.  Prepare yourself for a very long and arduous journey.
~~~And when more doodle hits the fan you will have the forsight to see it coming and just say "yes, I've been expecting you.  I have my super duper doodle scooper armed and ready for you"
~~~What is this super duper doodle scooper you might ask?
~~~Spirit/Wisdom. While you are ill you can begin to heal by building these two mighty forces.
~~~How?Seek out Wisdom.  Go to the book gettin place and find the wise ones.  If you want to get wiser find those who are wiser and follow their lead.  Turn your inner light on.  Cause Momma ,you gonna need it!
~~~And if this Lyme thing should be short and sweet than I stand corrected about the long thingy dingy.
~~~Of course you may want to take the "I am healed"mantra chant path.  Or a million other healing techniques.  Just meanwhile, until the physical healing begins,don't ignore the Wisdom/Spirit building.  This will be the key to healing even before the physical healing begins or even happens.
~~~Because if you think that healing is only about the physical aspect of your life then you are right-and you will lose.  And if you think that healing is about the spiritual aspect then you are right-and you will win.
~~~Healing is not about ridding the dis-ease of the body but of ridding the dis-ease of the mind.  The dis-ease of the body may or may not leave but if you do not rid yourself of the dis-ease of the mind then you will be trapped.
~~~Free your Spirit and the body cannot jail "you".
~~~I'm gonna be quiet now.I'm goin(gone)to my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~meditating on wisdom~~~waitin for a butterfly~~~coocoo, Love to you,"
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