Uncertainty

Well, not much to report.  No change.

I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder.  This could explain all the weird urinary symptoms, with the absence of actual UTI.  I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.

I'm doing an at-home experiment as a result, called the poppyseed test.  It's exactly what you think.  I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.

I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part.  I do occasionally have more pain, but it's few and far between.  Wish I could say that things were healing, but my urine keeps changing and getting darker.  I'm peeing blood again.  So today it's not really getting better, but how I feel is getting more tolerable.

Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise.  Every morning when I stretch my right leg, it cramps up.  It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda).  Prednisone is seriously no fun.  Can't wait to be finally tapered off - only about seven more days!!

My life feels like I am at another set of crossroads.  It hasn't even been a year since I totally bailed from my first real job.  I loved that job, but there were so many things wrong with that location.  I just could not stay there any more, waiting for the ship to sink.  I felt guilty and terrible.  But it wasn't right.

Well, I feel like this just isn't right.  It can't be right.  I don't belong here!

There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!

Love, MSloan 

When Spasticity Strikes Back

Well, it has been a thankful long time since I have felt a need to update my MS blog.  Things have been generally well.  I quit the job at the sinking ship.  I have a new job which will allow me to run my own office very soon - 2 weeks from now, in fact.  I won't need to commute from home to work any longer.  My daughter is beautiful, smart, and a joy.  My husband, despite being left to watch her for several hours as I commute and while I attempt to have a life as a working mother, has no plans to leave me :).


Well, as the weather has proven in the past three weeks in Northern California, it has been bloody hot.

It began about three weeks ago with a particularly hot day.  I noticed when I put my baby in the bathtub that as I bent over, I felt the ever-familiar Lhermitte's sign tingling in my feet.  It has been about a year since I felt it, briefly, after a long walk.  I felt it again and again, every time I moved my head, for about three or four days.

Then, the numbness returned in my legs.  Only in pieces, though.  Not enough to really raise any red flags.

I had an MS hug earlier this week - started on my left side, tightening beneath my ribcage, then slowly spreading around the front to my right side.  By the time I went to bed, I wasn't able to take a full, deep breath without pain.  But by morning, it was gone.  I figured all of this was due to the heat.

Well, tonight while we were in the grocery store, my husband and I were teasing each other.  I specifically remember him poking at my bottom when I suddenly felt a sharp tug in my left foot.  It was a cramp.  I figured, no big deal, it's just a cramp.  But it didn't go away - I had to stop, take off my shoe, and try to massage my foot (in the middle of the store, no less) while I watched my second toe contort as if it was out of place.  The muscle contraction was so strong it was moving my toes from the ball of my foot forward!  Oh, man, it HURT!   I know I seemed like a baby to him, but after five full minutes and no let up, it felt really scary.  I couldn't walk on it.  I hobbled around one aisle looking for a single item when I gave up and told him I was going to the car.

As I limped out of the store, my left foot started to feel better.  However, I was cautious.  I called my sister as I had to talk to someone other than my husband, who I am certain thinks I am blowing this out of proportion (I'm not).  And guess what?  Just as I was looking for my car, dammit if I didn't get a bloody cramp in my other foot!  Akkk!!!!  I felt like I was being attacked by my own feet.  I got in the car and just sat still, massaging my feet and hoping the cramping would stop.

Since we got home, I have been trying to keep off my feet, literally.  I am worried that maybe it was my shoes, maybe it was just how I was walking.  I feel literally scared of walking right now.  I'm afraid if I put weight on my feet, they will spasm.  So I am holding still.  My anxiety over it is making me walk funny, which I fear will mean I will sprain something.  Every time I walk up my stairs, I get a sensation of early cramping in my foot.  I am now hating my husband for wanting a house with stairs when I told him a ranch style might be better for my future.

And, I understand better why it may be a good idea to get a handicap placard if it ever happens again.  Walking across the parking lot (hobbling, more like) was embarrassing and I just wanted to get to my car.

MS fucking blows.  And I was doing so well!  Fingers crossed that this was a one-off.
Love, MSloan