Denouement

Stayed on crutches first half of the day, made dinner (heating up leftovers, slicing bread, and washing and cooking fresh green beans) without crutches.  Definite pain in IT band area, some dull soreness in SI joint.  Pain while sleeping up to a 3 when rotating.

Came back today from a two night trip Paul and I took for our 13th anniversary.  We went to Spring City to a bed and breakfast called Scott Farm B&B.  The Scott's have just two rooms.  They are really gracious hosts, and really inexpensive as far as B&B's go (just under $100 a night).  It's really sleepy in Sanpete County on Sunday, but we took a drive to Scofield reservoir, we had never been there before, and we found a museum open in Fairview, and we found a restaurant in Mt. Pleasant.  We took a walk (me crutching) around Snow College, where the mosquitos tried to make lunch of us.  It was a nice little vacation.

Pain this morning a dull 1 while walking around.  I am not sure what to do, but I am leaning toward getting off the crutches no matter the pain.  I just can't do it anymore.  I committed to 3-4 weeks and yesterday was the 4 week mark.  I have a PT appt tomorrow and get my IT area worked out, which might help.  I am sad that I am at ground zero again, but I'm getting used to it at least.

Worst pain ever last night, up to an 8.  Pain in evening was on the lower side of my hip, but by night was right on my SI joint.  Pain when I reach for water, cough, sneeze, laugh.  I couldn't get out of bed on my own when I needed to go to the bathroom.  Oh man.  It may have been my imagination, but felt like bone on bone to me.  I'm ready for pain meds if this keeps up.

I have pain this morning but more low (like 1-2) unless I sneeze or try to walk on it.

Hey so, pain was about a 2 until 2pm, PT appt.

Standard stuff.  Steve had me do some knee rocks, gradually increasing the length of arc.  Then I walked about 30 ft back and forth in front of him 3.5 times.  It started at a pain of 2 and was about a 5 at the end, limping got heavier, steps slower and shorter, tried to keep the pain out of my face because I feel like a wuss.

 Then total gym.  We chat and he says he thinks these are my muscles creeping out of atrophy (not his exact words) which makes some sense since I have pain in different places on different days.  Friday-Sun high hip, Tuesday low hip, today, sitting bone.  I tend to have pain in one of those places plus dull soreness in SI.  When I walked at his office, did knee rocks and total gym, that moved my pain squarely to the SI area.  I made sure he understood that, but he said it's still healing, that I don't have the muscle/tendon strength to support the pelvic area.  Also while he was working ham, pain radiated up my glute and to SI area, he says that means it's not the sciatic, but muscular, because the sciatic nerve only runs downward, not upward. He says my pain may stay the same for several days but should gradually recede and my motility will gradually increase.  He says use the crutches but continue to increase the % of time and % of weight on feet gradually, even if it causes pain.  He says I need to work through the pain.

I talked with Dr. McLane this evening. She said that if my pain doesn't go down by Monday, she wants another MRI, that perhaps something wasn't seen in the first one.  That was my line of thinking too. 

I sport a tape job on my bum from Steve to stabilize the pelvic area.  So far so good.  I feel better this evening than I did last evening.  We'll see if bedtime has me in a fetal position, crying from the pain again :P   I am struggling so well!!!!!

Update:  pain in evening much better today than yesterday, 1-2 when walking around, up to a 2-3 rotating in and out of bed at night, the most dramatic pain drop in one day I can remember (since last night was ranked top 2 in pain). Yeah!

Felt much better last night and just some low level pain rotating in bed this morning.  Some slight soreness, pain level 1, when walking at times.  My crutches are just dulling the heel strike a little. 

Night pain 2-3 at times while rotating.

Felt great this morning, crutches just along for the ride.  Was preparing/packing car for a moonlight picnic surprise party for my best friend Lupita:  cheeses (brie, gouda, and a new york aged cheddar w/peppers in it), crackers, martinellis, grapes, and sees chocolates.  There were six families in all there, and we had lots of fun. 

I did way too much walking without crutches.  Its just inevitable.  My outer hip hurt worse and worse, until my limp was quite substantial.  I didn't have any pain in my SI, except some pain while rotating in bed 2-3, so same as last night.

Some SI pain getting out of bed, about a 2.  I am going to be a good girl and stay on my crutches.  We are going to the Air Show at the Hill AFB today, so there'll be plenty of opportunity to crutch today.

Last night pain at 5 in bed.

Today felt ok, felt much better rotating in bed, only one stab of pain up to 5, the rest was lower levels of pain.

PT appt.  I thought to beg to get off crutches regardless of consequences.  He said to be patient, though and to stay on crutches and put more and more of my natural weight on both feet.  Sounds reasonable, and I did just that.

Felt better rotating in bed.  Still pain at times when rotating but not too bad.  (up to a 3 or 4 at most).

Sneezed in bed this morning and had a "nice" crunchy poppy feeling in my SI area, along w/ pain.  I don't mind pain in bed if I can just get off crutches.  

I am excited about Saturday's marathon.  I plan on watching the first 3 hours of the race.  Should be fun!

pain 1-2 during day, 5 or so at night

Pain 2-3 during day, pain getting of and off the Walmart jazzy, about a 5 when getting out of bed and shifting during nap (naptime consisted of reading Gone With the Wind--haven't read it since high school, one part today totally cracked me up, I get to watch the movie when I finish it).  Lower level pain is a dull ache, high pain is some times scrape-y some times pinchy.

Got another MRI today, since my pain hasn't gotten better over the last 5 weeks of no activity and crutches.  The tech said the dr. analyzed the MRI as it was taken to make sure they got the images they needed.  So I asked to see the dr.  He showed me the images and we discussed them. 

My stress reaction has gotten worse in the past 5 weeks.  Don't ask me why or how, I am not sure.  The joint is much brighter now.  He said maybe there is an infection, though there is not extra fluid in the joint.  He said more severe rest or a pin may be in order.  I left the clinic in tears and visited Lupita, who lives right there, then the imaging clinic called me back and said the dr. called dr. mclane, and they decided to test me for an infection.  I went back to that office, and got a SI tap, which involved enough pain I wasn't sure I could take it, two shots of local anestetic.  They had a hard time actually getting into the joint, which I guess is really a small gap.  It was lovely.  Then I went to Orem CH for a blood draw.  I see Dr. McLane tomorrow, and most if not all of the lab results will be available for our appt.  I am tired of it.  That's all I will say.

Appt w/ Dr. McLane.

She's perplexed, took alot of time with me, called the radiologist who read my mri during my appt to discuss.  It was shocking again to see my MRI images side by side, my more recent one has much bigger and brighter uptake on both sides of the joint.  My lab tests came back negative, except the SI tap culture won't come back until Monday.  We are going to use the surgeon as a second opinion of sorts.  The surgeons office gave me a July 27th appt a couple of weeks ago, with some pressure Dr. McLane got it moved to July 13th, but she also left a VM for the surgeon to try to get me in earlier and explain my case.  He has access to the MRI images.  I'll call Dr. McLane Monday for the culture results and to see if the surgeon called her back.  She said I "probably" could run again after surgury, but it depends on what the surgeon does, and it would require recovery time.  She said there's a slight chance my sacrum and ilium are fusing.  She sent in another lab test to test for that.

Oh, yeah, and I am now in a wheel chair.  I only have one and its in my home (I am sitting in it).  I guess I will be trying more extreme demobilization between now and when I meet with the surgeon.

I was able to watch the first 3 hours of the race.  I saw the leading men, Lisa, Marion, Maureen and Smooth just once, Mary Anne three times, and Josse 4.  I met Crockett, Rivertonpaul, and Amber during the race.  It was really fun.  It was the first marathon I have been a spectator for.  Props to Hyrum for a great second race.  

pain at night 4-5ish

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).

Woke up to dull pain on right only, felt good during the day, just some tiny pangs from left, and dull stuff on right.  Took IB before going to bed.  Can get in and out of bed w/o pain.  Some pain on right side when I tried to sleep on that side (abt 2-3).  So not bad.

No pain getting out of bed--sweet!  I won't take IB today and tomorrow to see if left side pain comes back.

Went to walmart at 10:30 last night, ah, the glories of not needing to wake up early for training.

Dull pain in SI during day 0-1, pain in bed 2-3, dull except when rotating onto side had a sharp but not too strong pain. 

Dull pain in SI 0-2, even while sleeping, best sleeping night in quite a while, day 2 w/ no ambien.  I am summarizing my pain, exercise and treatments in a spreadsheet and it shows what an idiot I had been about the running/resting cycle back in Feb/Mar.  I hope what I have learned will become useful to someone else, and even hopefully for me (if I am ever in training again).  

I am fasting, have a headache.(ended up being a 25+ hr fast)

Eve:  Neurosurgeon spent over an hour with me, was very kind.  Discussed my case, went through the dozens of films I brought from my mri's and xrays, and then did some manipulations, including making me squat in a catcher position for a couple of minutes to test my piriformis (not easy to do since was at 24.5 hours of my fast).  Had me walk the hall once.  No pain on walking, just right a bit weaker than left.

He says that the surgery he could do is fusing the joint, which he doesn't recommend since I am so young and it would cause more stress to my left SI and that joint might need to be fused a couple of years down the road, and I would be stiff for life in that part of my body.  He says he is not aware of anyone who scopes the SI, but will ask around, but that he might suggest a bone biopsy to get more info on what is going on at that joint.  He says there isn't an alternate explanation for why there's uptake on the SI in the MRI's besides infection or stress reaction, and he agreed its not an infection from the lab work.  He is not convinced I have A.S., and he was seeming to rely on the MRI images for that doubt, despite my genome, SI pain, and sausage toes.  He says that I can be doing more damage than good by staying off my feet this long, though he did agree with the original crutch decision.  He didn't have an explanation why my stress reaction would get worse when I was on crutches for the 5 weeks between the MRI's.  He asked if I had been on an extensive course of anti-inflammatories, and I have not.  He seemed to have some doubt if the steroid shot got in the right place.

Results:  He will call Dr. McLane.  Then I will talk to Dr. McLane about how to proceed.  He thinks the injury was likely caused by my hamstring injury and my hamstring injury may have been caused by my orthotics.  He suggested walking without the orthotics.  I may get a bone biopsy, I will ask about potentially going on another steroid round as I transition to walking.  I will proceed with trying to get into a rheum. to confirm or override the A.S. diagnosis by McLane.  Whether I have or don't have A.S. is irrelevant in the short term (other than you'd want to be on medication asap), since I am highly immobile and will need to increase my mobility gradually either way.

This appt was two steps forward, for which I am grateful.  The doctor, Dr. Gardner, was wonderful and patient with me.  I'd highly recommend if you need spine surgery :)

Best sleep in a while last night, pain 0-1 most of the time, spikes to 2.  I have been on crutches since last night in another attempt to get walking, and my legs have some weakness, likely some ligaments around my ankles, but SI feels fine as I hobble around. I always strike both feet, but vary the amount of weight the right foot gets.  

The dreaded weigh in showed not too much damage during the time in the wheelchair.  Most excellent.

Same pain Wed night, 0-1, spikes to 2.

Went to the rheum at 7am because they had a client who they though might not show up for a 7am appointment.  I got 5 hours of sleep because Paul's in a working whirlwind, getting inspired and worked til just past midnight.

I got in!  So, he asked me tons of questions about my family history, and pains from since I was a child, I always ready to talk was willing to oblige.  Physical exam. 

I can clearly see that he sees this from a rheums perspective.  Does that mean I need a second rheum's opinion on the diagnosis?  I will wait for my second appt to decide.

He says he is comfortable with the AS diagnosis, but ran a battery of more blood tests and xrays, and he wants to see my dexascan results, then we have another appointment to go over it all on July 7th.  He said that they've been barking up the wrong tree with the infection since if I'd had an infection all this time I'd be dead, and the only way I could have an infection is if I was a drug user and inserting needles in my SI joint.  It was kind of funny.  He also found it amusing that I was on crutches, as Paul said when I got home, he sees lots of people in pain and those people with arthritic pain don't jump into crutches when they have a flare up.  I explained to him how I tried for two weeks to get off the dang crutches with too much pain for success, but I still felt kind of stupid.  The doctor was nice and took lots of time with me, about 50 minutes, so don't get the idea that he was mean or unempathetic.

He said my images point toward AS and that 90% of the people with the HBL-27 genome come down with one of 5 arthritis type disease, AS being one of them.  He said it's the most predictive genome in the rheum world.  And 95% of those with AS have the gene.  In comparison, only 50% of people with RA have the RA gene.  He said each arthritis type disease had its own specific treatment (ie drug) that doesn't work on others, so he wants to get the diagnosis dead on before treatment, so we meet in 12 days and go over the other results and then come up with a possible treatment plan.

I do feel there's a chance of overdiagnosis on this.  I am naturally cynical/critical so it's hard for me to trust any doctor, and thus separate appropriate and inappropriate levels of skepticism.  I'll see how the next appointment goes before deciding for/against a second rheum's opinion.

So happy to get into a rheum within 8 days of knowing I wanted an appt, not so happy to still be in the AS column, but I am calm about it.  I am grateful for the early diagnosis if the diagnosis ends up etched in stone.

Walked in afternoon mostly, just around house.  Felt tired and tendons around ankles ached but SI did fine, pain 0-1 at night!

No pain, except in ankles (feeling of weakness and a 1/2 sprain type feel) and my right calf is tight.  Last night had two tiny twinges of pain, but they were not frequent or painful enough to assess if they were in the SI or not.  I pray this is true recovery coming on.  I haven't felt this good since Jan/Feb (on the non-pain days in those months).  I am solely walking for getting around, but trying to save myself walks around the house where I can, trying to stay sedative.  I will return to normal homemaking if I can have a week of no pain.  No pain at night.

No pain except one tiny twinge (pain level 1) during nap.

no pain in morning, started midafternoon, so slight I couldn't be sure it was SI but by night I was.  Up to a 3, consistent pain, dull, but pain with every step.  Even rotating in bed the pain was just dull, so that is something to be grateful for.  At least I was able to get back walking without pain--that was a blessing.  I plan to keep off the crutches/wheelchair despite the setback.

Pain all day while walking, gradually increasing to 3, took two aleve last night, pain a 2 by the time I went to bed and went down to almost 0 by 3am, so that's good.  I'll do a course of Aleve for  the next several days to see if it keeps pain away.

The Aleve is working, pain mostly 0-1, but some 2, both in the day and while sleeping.  I'll continue to take it through Saturday, then lay off.  Still walking. Found myself taking the steps in our house really fast coming down.  It was kind of exciting!