Rock the boat...don't rock the boat baby...

[Note: This piece contains language that some may find offensive.]
***

This morning, as I moved my body and arms through the Synergetics motions, hopeful tears streamed down my cheeks.

Oh my gosh. Is it really real? Do I have my arms back?
Don't think that way yet Carol. You still have 4 more weeks until your next epidural.
Yes, but, I think they are back! I've not upped my steroids and I'm almost at Post-week 8.
Just hang on and wait and see what happens over the next 4 weeks.

A couple hours later, as I noticed how 'normal' my arms felt, it hit again.

Oh my fucking god. Oh my fucking god.
Is the nightmare over? What if it's over?
Oh my god. What if it's over?

Again, hopeful tears streamed down my cheeks, as they are at this moment while I type.

Memory upon memory flowed through my mind recalling this nightmare and the unforgiving, relentless, tenacity of this disease as it has spread through my body.

And it has been relentless.

***
Saturday, April 2, 2016.

My cell phone alarm sounds at 7:00 AM. I sit up on the edge of the bed and then stand up and then take a step to get to my phone and turn it off. Simultaneously, the room begins to rock like a boat. I flex my leg muscles to stabilize my stance and maintain balance. I manage to slide my finger across my cell phone screen and silence the alarm and then immediately sit down.

Fuck. Fuck. Fuck. 

I lay back down to see if the room rocks again. And it does. I close my eyes and clinch the sheets with my hands to hold on until the rocking stops.

Then I lay still, on my back, in the dark, in the quiet.

God. I was hoping symptoms wouldn't spread this round. My arms have been doing so much better the past couple weeks. But it's Post-week 5-1/2. If the nerve damage spreads, it usually does so between Weeks 4 and 6 and again between Weeks 10 and 12.

I breathe deeply and then slowly rise to a sitting position. And I count. The rocking begins around the count of 10.

I close my eyes, and with both hands I clinch the side of the mattress for balance. I count again. The rocking ceases at around the count of 7.

The same happens when I stand.

Then I am pretty much okay to walk.

This pattern of wooziness is continuing, and has morphed a bit along the way. It's not gotten worse. And I have adapted. I can still drive and ride my bike. I would be devastated if I couldn't ride my bike.

I was quite depressed on Sunday, 4/03, the day after the rock-the-boat lightheadedness started. I thought, Am I going to wake up blind one morning? That's not likely. I've never read that neuropathy can cause blindness. It can cause orthostatic hypotension, which can cause lightheadedness and dizziness.

I had this same symptom back in the fall of 2014. It lasted 6 weeks and went away with my next epidural at that time. It hasn't returned, until now.

***

I had a prescheduled appointment with the neurologist on Monday, 4/04, to get my neck shots. That appointment has been one of my best with the doctor. Maybe I'll write about why someday.

I got my shots and we discussed the dizziness, among other things. As far as the dizziness (which isn't really dizziness; it's rockiness), it is another wait and see, unless it gets worse.

Some good news is that I got my vitamin B6 levels down to normal range. That's HUGE!! And, that could be why my arms are doing as well as they are now. 

Vitamin B6 toxicity can cause permanent nerve damage. That my arms are starting to work again (I hope, hope, hope) indicates that the severity of the damage isn't permanent.

I am really proud of myself (and my body) for getting those levels down. I'm adding back fish and nuts to my diet in limited amounts and will see how I do. I am staying away from any foods or supplements that have added pyridoxine or pyridoxine hcl.

But, I can't count my chickens yet. I have to wait and see.

The other maybe 'good' news is that, my iron level is on the low side. I may have inadvertently lowered my iron while lowering my B6. Maybe. That's 'good' news because maybe my wooziness is due to low iron and not due to nerve damage spreading. Maybe.

So now, I'll get my iron back up and still keep my B6 in the normal range.

***

I typed up my rally sheet for the next 6 weeks leading up to my next epidural on 5/16/16.
Since my iron is low, I added Ironman to my Super Hero therapy team.
I'm relentless too, at least for now.
Go get 'em Carol!

rally sheet 2(B), 2016