Denouement

day pain 0-1

night pain 4-5

day pain 0 

night pain 1-2

Pain free until I was trying to nap and I sneezed, and there was a nice pop and pain in SI (about a 3-4).

Pain at night was a 3. 

On my pain scale, a 4 is when I grit my teeth, 5 is sometimes involuntary exclamation upon pain, 8 is crying involuntarily because of pain.  So a three's not bad, just lame. (is that supposed to be some type of joke?)

Night pain = 3. Third day in a row of sausage toes (just the sound of that is bad-sorry!).

So for the dwindling numbers who still read my blog, I went to Dr. McLanes.

My culture from my SI joint came back negative for infection.

My blood work I took Monday was positive.  It was a HLA-B27 test, I believe, and it was positive for Ankylosing spondylitis, defined in brief by wiki as a chronic, inflammatory arthritis. It affects joints in the spine and the sacroilium in the pelvis, causing eventual fusion of the spine.  Its the same "disease" (I guess its a disease?) that Paul Petersen has, so at least our blog has a pioneer in this condition.

I was actually quite relieved to figure out what was going on, though it doesn't totally explain the stress reaction and its worsening, as far as I can tell, in my AS infancy.  It does explain why it was so hard to tap my SI joint (my xray today seems to indicate the joint is getting smaller). 

I am still digesting the fact that I have a permanent medical condition.  I am trying to get an appt with a rheumotologist.  I still am trying to get an appt with a neurosurgeon, in case my stress reaction continues its lack of healing. 

It's too easy to ask you what band this is--it's  a new Green Day song, and is really good:

Do you know what's worth fighting for
When it's not worth dying for?
Does it take your breath away
And you feel yourself suffocating?
Does the pain weigh out the pride?
And you look for a place to hide?
Did someone break your heart inside?
You're in ruins...

One, 21 guns
Lay down your arms
Give up the fight
One, 21 guns
Throw up your arms into the sky
You and I

When you're at the end of the road
And you lost all sense of control
And your thoughts have taken their toll
When your mind breaks the spirit of your soul
Your faith walks on broken glass
And the hangover doesn't pass
Nothing's ever built to last
You're in ruins

One, 21 guns
Lay down your arms
Give up the fight
One, 21 guns
Throw up your arms into the sky
You and I

Did you try to live on your own
When you burned down the house and home?
Did you stand too close to the fire?
Like a liar looking for forgiveness from a stone

When it's time to live and let die
And you can't get another try
Something inside this heart has died
You're in ruins

One, 21 guns
Lay down your arms
Give up the fight
One, 21 guns
Throw up your arms into the sky
You and I

Pain 0-2 during day, sausage toes less until afternoon, now, they are plumping up.  Some unexpected pain in left buttock, please don't tell me it's my left SI.  Not sure as of yet. Started this evening, getting some sharp pangs, but not too intense, about a 3.  Please let it be a freaky pain that goes away the next day. Hypochondriatic psychosis????  Nighttime - pain on right dull, more hamstringy and 2-3, pain on left more sharp, about a 3, miserable night, first time wearing SI belt, not sure if wise to wear.

Paul says he's always wanted a woman with sausage toes.  His dreams are being realized!

A dilemma I face: my stress reaction got worse while I was on crutches, I was also getting PT at least once a week and doing the bone stimulator nightly, normally a stress reaction benefits from less impact.  Before I got a prelim diagnosis of AS the radiologist and my sports doc said, more extreme rest or surgery.  AS treatment usually involves mild - moderate exercise, I think because you want to move those body parts to prevent further calcification/bone fusion.  So I need to treat AS, and fix my stress reaction, but they seem to be at odds.  I was in favor of extreme rest while waiting for a neuro surgeon consult, but what if I am enabling further calcification in the meantime?

So should I be off my feet (currently in wheelchair, have been since Friday, with exception of getting to from car and watching marathon), or should I try to get on my feet and push through the pain?  I am sure my rheumatologist could help me with a wise course of action, but I couldn't even get an appt set today.  The doctor looks over his cases before telling the receptionist how far out to schedule them (according to severity of cases).  My info is on his desk.  So I have to make a decision without much info.  My sports doc says she just put me in the chair to relieve my pain.  Major pain is when I sleep, though if I start walking again I will likely get pain, like the end of May/beg of June when I was trying to get of crutches.

Calgon - take me away!

Woke up with pain in bed, on both sides, but it got better after I got out of bed.  Pain on left side started up again in afternoon.  I used wheelchair, except crutches into a gas station and into a restaurant.  Crutches are tricky when both sides hurt, but I favored the stress reaction side. Nighttime:  my bed was a torture chamber, used SI belt for 2.5 hours of tortured sleep (no ambien to knock me out), then took it off, pain up to a 7-8 on left side, up to a 5 on the right, left is more raw and sharp. 

Went to the zoo with the family.  It was hot!  I am substituting in a 5 year old church class on Sunday, and my little JJ is in that class.  I asked JJ if he would be a good boy and nice to me in class, and he said, "Yeah, Mommy, and I won't even let any of the kids make fun of you."

The bad news is that the rheum. didn't call to set up an appointment today, and he's out of town until next week, so I likely won't even get an appt set up for a week.  The good news is I got an appt with the neurosurgeon my sports doc would be the best fit for me, for next Tuesday.  Hopefully he's very familiar with A.S.  Perhaps he'll say, you need to get into a rheumatologist asap and will help me get an appt.  We can always hope.

Body ached upon getting out of bed, left and right SI and right hamstring.  Both pains went away only to emerge again in the afternoon/evening, about to a 4-5.  Paul suggested taking some IB, but I said I had tried that for the right side and it hadn't worked, but I took some anyway, 800mg at 10pm.  By the time I went to bed at 11pm the left side pain was gone.  During night right side was dull but not bad (up to 3).