Sunday, June 01, 2014

The New "Normal"...

No, my cervical spine doesn't really look that way on MRI.  The photo has been altered.  It just FEELS that way lately.  And when I say lately, I mean long enough to now feel not temporary...long enough to feel like the "new normal".

People living with Multiple Sclerosis deal with "new normals" every day--whether due to a relapse that doesn't quite remit or the slow, steady progression of a neurological disease that just doesn't always play nice.  "New Normal" can happen on a daily basis with MS or it can creep up and slam you with a "new normal" you never thought possible--like sudden loss of sight, or mobility, or bladder control, or...the list goes on and on. MS teaches us new highs and lows all the time and just how important it is to not take things for granted because a "new normal" may be lurking just around the corner.

If you've continued to follow this blog (it appears there are still 112 of you over there hanging out as *followers* for reasons I have yet to understand!), you have watched me, BrainCheese, move through some tough ups and downs with MS over the years and you recognize for the past 4-5 years, I've been on an "up" cycle.  I haven't had a lot to say here...I've ignored you...I've ignored MS...I moved from a place of discomfort with the disease to a place of inner freedom.  Yay for me and don't be a hater! LOL  And although that movement was initially a struggle to change my mindset, it became easier when the debilitating symptoms (or at least I thought they were) lessened and many of the symptoms became not only manageable, but no longer part of my "normal".  I've actually had moments where I have *forgotten* I have MS because the disease is no longer front and center in my mind and my "normal" has become a more lasting status quo.

During this time of just saying *no* to MS (Nancy Reagan would be so proud), I have become acutely aware of another chronic ailment that is literally a PAIN IN THE NECK (and the rest of my spine) -- Degenerative Disc and Osteoarthritic Disease.  Basically, the discs in my neck/spine and the vertebra are eroding/rotting away and this is creating an abnormal curvature and protrusions into my spinal cord as well as compressing peripheral nerve roots where they exit the cord and travel out to essential limbs and other stuff I like to use, like my bladder.  :-)  I have seen surgeons and neurologists specializing in pain management and they kinda look at me in wonder, surprised I am still walking and not peeing on myself--their eyes also light up with $$ as they see a potential goldmine of "wrongness" just waiting to fall apart before their very eyes and require thousands of dollars and bionic parts just to KEEP me walking and not peeing on myself.  They love to hate me as I continue to not *fall apart fast enough* for them to be able to put their kids through college on my insurance dollars.  And I continue to throw up in their faces (not literally) the fact I believe it is their very *medicine* and past use of mega steroids for the MS that has CAUSED my spine to erode in the first place--we agree to disagree (but I know I'm right. Heehee).

Until recently, I've cruised by thumbing my nose at modern medicine and remain off all MS drugs except symptomatic ones (like muscle relaxers, etc.) ...until the "new normal" came...until I began experiencing a nerve pain/radiculopathy that really IS tapping on my last good nerve.  For the past 4 weeks I am guessing (because I couldn't be bothered to write it down) I have been experiencing that aching/burning/tingling/numbing/deep/unrelenting/zinging/irritating/I can't sleep with this/oh dear god I may slap you because I hurt PAIN in the right side of my neck/shoulder/upper arm and now my forearm.  Yeah, that pretty much describes it.  I don't need a smiley face chart or a number or a scale to rate it -- it EFFING HURTS.  Nuff said.  And, it is my "new normal".

I have tried several home remedies such as anti-inflammatories, heat, ice, stretching, etc., and there is little that is helping calm my nerve(s), so I have resorted to attempting to navigate the neurology world again -- I'm not pleased with my "new normal" because it is interfering with my happiness and trying to bum my voyage.  At the same time, it is what it is and I might as well accept this place I find myself in.  Or, as I said to a colleague the other day, "I'm not complainin', just s'plaining".  I'm trying not to sink to an all time low of *new normal bitchiness".  I'm trying to refrain from slapping cute little kittens out of children's hands because I hurt.  I'm really trying to see the humor in this situation (but would find it oh so much funnier if it was YOU and not ME!) and keep a calm head on my shoulders -- hell, I'm just trying to KEEP my head on my shoulders and attached at the neck!!  Hopefully I will find some relief soon via conventional medicine -- before I end up doing time for crime because I am irritable.

I sure hope when this is all said and done, my neuro team's kids get an excellent college education at a private University!

New Normal - over and out.

1 comment:

Roger Midgett said...

Could I have "Things that shouldn't be normal" for 100, Alex?

It's always bad when the doctors become "interested."

Keep,writing. Pretty please?