Feeling Gutted

The Neurosurgeon: What does the Neurologist say?
Me: I don't he think he believes me.
Him: Really? Then why is your eye drooping?

 I don't want to do this anymore.

That's the main thought going through my head today. Over the past couple of months, I've seen a Chiropractor, Acupunturist, Neurologist, Lyme Literate Medical Doctor, Rheumatologist, Neurosurgeon, Dermatologist, and Orthopedic surgeon.

I'm still hurting.

I have slipped discs in my neck.
Bone spurs in my cervical spine.
I'm shaking/convulsing uncontrollably in my sleep (sometimes when I'm awake).
My body burns and aches.
My left arm's losing strength.
My face has cystic acne.
My hip hurts.
I'm becoming numb (literally and figuratively).
And, yes, unless you're a Neurosurgeon trained to look for Ptosis, I LOOK totally normal.

On the outside, people see a girl...a disheveled, tired-looking girl, but one who can walk, talk, laugh, and function.

Behind the scenes, life looks like this...

 

EEG's show no signs of seizure.
Sleep studies, per my doctor, are "unremarkable," but show disrupted sleep cycles.
MRI's are troubling, but not worth surgery.
Nerve conduction tests show nerve damage, but no one quite understands why.

I am being referred to specialist after specialist after specialist.

No one seems to have the desire and/or skill set to help me.

I WANT to tell you life is moving.
I AM moving.
I AM getting better.

Mostly, it FEELS LIKE I am on the losing end of a Monopoly Game: surviving the board, losing my houses, and dreading my next roll of the dice.

CRAP!

To stay sane, I try to focus on other things.

Art:

A piece I am currently working on....

Time with my hubby:

Me and Angel at a friend's house.

Food:

Not the best for my health, but WONDERFUL for my spirit.

-Insert other things as pain and energy allow -HERE-

Sadly, I think I'm developing a strong case of Fukitol.

Too tired to fight...too sick to care.

Is there ever an end to this?

I'm beginning to wonder.

Comments

[Darla Brown]

Are you seeing an LLMD? I saw 40 other type of doctors and medical professionals who could not help me. Once I got with my LLMD I started improving slowly but surely. Good luck to you! Be well....

[Kathryn]

My heart is breaking for you Kat. I want so badly to give you an end date for all of this so that you can at least point to it and tell yourself: I can do this, I can suck it up and deal with it until that day. But I can't, and it's breaking my heart to see you down, frustrated, feeling helpless. None of these are you; you are a positive thinker, a go-getter, laughter-makes-all-the-difference-in-the-world person. I have faith in you Kat. You will not be defeated by this; YOU won't allow it, and neither will your friends (near or far). You're one of my hero Kat; when I think life isn't such a bag of Oreo's, I literally think of you. BIG GIANT RIB-CRUSHING, BREATH STEALING HUG.

[Renee]

Wow,you are being beat up by the Lyme and by all the medical probing and poking! So sorry things are so bad for you right now. Praying for relief for you....lots of love to soak in.....lots of TLC....

[Alter Everything]

Thanks Kat and Renee...I know both of you have had more than your share of all of this stuff. No fun and hopefully temporary.

Darla, Thanks so much for responding. I actually do see an LLMD and have made great progress since I started treating with him over a year ago.

When the symptoms get too nutso, he always refers me out to rule out other stuff...which is smart. Sometimes I think I have just reached the end of what he can do for me. Glad to hear you're improving. Hope you continue to do so. With love and gratitude...

[Eve]

Wow, best blog ever!
I too have spent years reading and trying everything for multiple chemicall sensitivity which has a lot of overlap with your symptoms. I have recovered mostly, but realize I am still delicate and could go back. I still have it, but not to the 'life is a nightmare' degree. I have a FB and website.
The reason I am commenting is because some of us , are going to try the baking soda mollassas cancer cure. You get your ph to 8 for 4 or 5 days and it's supposed to kill the candida or fungus that is causing all of the problems. I wrote about it on my site detoxTheBodyMCS.com .I have a theory that it might work for other chronic illnesses. The cures for cancer, Lyme, ms,MCS, chronic fatigue, fibromyalgia all seem to be the same. I read a lot about this cancer cure and there are people out there who say it worked, and fast. I see you try anything, so you can do the experiment with us if you want, or read about it later to see if it worked. Awesome blog, I am going to post and tweet it. There are so many people going through this type of nightmare, but you never seem them because they are home. I was mostly at home for 2 years.