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.

Saturday, May 10, 2014

Nerve Pain: It's Not For Sissies...

I'm sure you've all seen this type of pain chart:
It's the common one found in most doctor's offices and clinics.  When discussing pain, you are asked to "rate your pain" with a number between 1 and 10, with the #10 being the most intense pain you have ever experienced.  It seems pretty simple really when asked to identify YOUR experience of pain compared to any pain you have ever felt in your life and qualify that experience with a number, right?  Yeah...NOT.
For those of you have ever experienced NERVE pain, whether associated with MS or any other neurological disease, you know the difficulty of which I speak here in assigning a simple number to something so complex.  Nerve pain does not fit nicely into a number or list of adjective descriptive words.  It's not the same ALL the time and the experience of nerve pain can change with each movement or situation, depending on how our brains or spinal cords are interpreting (or failing to interpret) the sensory experience.
A trip to the doctor's office can go something like this:
Doctor:  "Describe your pain to me."
Patient:  "Well, it's located here (pointing to a body area), but travels down here(pointing somewhere down the body to a more distal area)."
Doctor:  "Is it a throb, or ache, or sharp pain?"
Patient:  "Yes."
Doctor:  "Well which is it?"
Patient:  "All of them."
Doctor:  "And what pain number would you use to describe your pain?"
Patient:  "All of them."
Doctor:  "What do you mean, all of them?  How intense is your pain right now?"
Patient:  "Well, it's not so much the intensity as much as it is the consistency of the pain."
Doctor:  "Sooo...what number is your pain."
Patient:  "I don't know.  It hurts."
Doctor:  "Is it the worst pain you've ever had in your life?"
Patient:  "Well, no.  Once I was hit in the head with a baseball bat and that hurt so bad I passed out.  If that's what you mean by the worst pain I've ever had in my life?"
Doctor:  "So your pain isn't THAT bad then?
Patient:  "No, I haven't passed out from it if that's what you mean.  But I kind of want to scream sometimes because it's constant and even though it's probably only a grimace on your chart there, it's so agitating and relentless and..."
Doctor:  "Is it interfering with your ability to do normal tasks?  Do you feel weakness or a lack of movement?"
Patient:  "No.  Is it only bad if I have those things, too, because I kind of want to scream sometimes, but I can still move everything and I don't FEEL weak."
Doctor:  "So you are tolerating the pain then?"
Patient:  "Um, well...I guess.  But it really hurts.  No, it's not a 10 on your scale there, but I don't quite know how to describe it to you.  I kind of feel like screaming now."
Doctor:  **Finds number for psych consult** 
Because I work in health care, I am very familiar with the use of standardized pain charts.  And yes, they basically suck as a reference guide.  I found this pictorial pain chart online and I think I like it better:
I think THIS pain chart best describes nerve pain -- it qualifies my standard "5 through 7" pain response with such a delightfully distressed/neurotic face, not the bluish/red frowning face of the typical pain chart.  :-)
So often in health care settings, patients are asked to qualify and quantify their experience of pain in terms meant to elicit a particular response from a provider.  I've lost count of how many times I've heard patients wishing to gain narcotics describe their pain as "an 11 on a scale of 1 to 10".  Really?  Seriously??  That usually only gets you a one way ticket to being ignored because YOUR pain, your very SPECIAL pain that is so great it's off the pain chart, is crying for attention in such a way it is no longer believable and therefore narcotics won't help you anyway.  And then there are the patients who say they are only experiencing a "5 out of 10" who's blood pressure is elevated, pulse is rapid, they are diaphoretic, and won't or can't move because the pain is so great.  How does their pain compare to someone who is a "10" (or that wonderful "11") and the "10" person is still laughing, conversing, watching TV, and enjoying themselves?
I'm not going to be so bold here as to say one of the above patient examples is in more pain than the other.  PAIN IS SUBJECTIVE.  It really can't be qualified on a smiley chart because the smiley chart does not take into consideration the individual's past experiences with pain, their current stressors, the barometric pressure, the recent amount of sleep they have gotten, what they ate for dinner, and a host of a million other variables that affect each of our individual responses to pain.
If you've ever had nerve pain and if you ever HAVE been hit in the head with a baseball bat (or frying pan, or 2x4, or...), you know the type of pain a blow to the body generates is quite different than nerve pain.  Baseball bat blows tend to be very intense, blackout crazy intense, throbbing intense, aching intense, sharp intense, and that whole other list of neatly packaged adjectives used to describe pain.  But nerve pain?  Nerve pain is not so simple.  I have personally used the following to describe my nerve pain:  "It's a 5 on a normal pain scale magnified to an 8 or 9 over time because it is constant, agitating, consistently annoying, present even when I sleep, causing me to feel out of control of my body which elicits fear, which creates an emotional pain that further intensifies the physical pain that I think isn't going to go away EVER and, so help me God if you compare your current pain to mine again, I may punch you between the eyes just so you can really have a similar pain experience as mine."
I'm just not sure there is a smiley face that best depicts that description of pain...