Thursday, December 31, 2009

More snow and happy new year!

Pain level: 5 in morning/ 6 by now
Dislocations so far today: right ankle twice.
Subluxations so far today: Right shoulder multiple times, left shoulder twice, left elbow once, right wrist once.
Meds: OH! good idea!  I'm gonna go take a naproxen, hardcore dose.
Major complaint: Stiffness in morning into afternoon.  Shoulders and the fingers of my right hand are very stiff and achy.

Another year flown by and a huge one for M & I. <3  It snowed more today so I was surprised to wake up NOT feeling like complete hell, but it's catching up now. Supposed to snow for the next 4 days. I did a tiny bit of light shoveling (more like push snow into a pile) so that M didn't have to do the whole thing herself.  Did okay.  My shoulders hurt now and my right hand feels stiff and painful.  More and more worried about arthritis.  Throw it on the pile of things that I'm scared of, I guess.  It's not the worst one on there by a long shot.

Stinging pains in my lumbar spine today.  Nothing too bad, just these zings that almost itch.  Weird sensation.

Happy New Year, all!  Hope it's full of good health and love and cheer!

Wednesday, December 30, 2009

Good day with good company

Pain level: 5
Dislocations so far today: right ankle once.
Subluxations so far today: Right shoulder multiple times, left shoulder once, rib on my right side once. Meds: none
Major complaint: Stiffness in morning into afternoon--especially in hands, elbows, and knees.

Had a friend over yesterday into this afternoon.  Got fantastically drunk and chatted until around 3AM when I announced that gram-ma needed to go to bed.  When I stay up that late it starts to feel like every joint in my body starts shaking and my whole body starts shivering.  Being exhausted and drunk makes for pretty good sleep.  Today my joints were average, even with the drive to bring B back to his house.  Still stiff but not horrific.  Don't think I'll try the new sleep stuff tonight.  I'm still feeling sort of tired.

Monday, December 28, 2009

Doc visit and more snow

Pain level: 6
Dislocations so far today: right ankle once, right thumb once.
Subluxations so far today: Right shoulder multiple times, left shoulder once, right wrist once.
Meds: Naproxen--hardcore dose.  Tramadol to come.
Major complaint: Inflammation and stiffness in morning into afternoon--especially in hands, elbows, knees, and spine.

Had my 6 month check-in with my primary care physician today.  Dr. B is fantastic so I wasn't nervous to talk to him at all which is a real novelty to me after so many years.  We went over my meds that had expired/run out (hydrocodone & hardcore naproxen respectively) and he gave me refills so I should be set for another 6 months to a year.  For my insomnia he's putting me on amitriptyline as needed at night to see if that will help me start sleeping better.  Starting out at half a pill and working up to 2 at the most.  Hopefully I can stay low.

Dr. B was concerned about how stiff I feel and the lack of mobility in my hands that I've been having in the morning recently.  I've always tested positive but low for Rheumatoid Arthritis but it's always been passed off as a false positive because my mother has RA.  Dr. B thinks that since EDS puts me at an increased risk and so does my family history that we should look into it more.  He gave me papers to get more bloodwork done and is having me go see another Rheumatologist.  He asked if I had seen a Rheumy before and I reminded him that I had seen Dr. A in Boston--and that he was the one who thought I was a nutcase making this shit up for fun.  Dr B said, "Oh, well he doesn't count so you need to see another one."  Dr. B is awesome.

So went to get those filled, but the snow started coming down something awful so we just dropped them off and will pick them up tomorrow.

Today has been standard stiff/pain for winter cold and snow.  Hobbling like crazy.  When we told the pharmacist that we'd come back tomorrow for the meds she looked horrified and asked if I was sure that I didn't need them now.  Must have seen the hydrocodone and how I am walking to today and figured I was seriously injured.  I wanted to tell her, it's okay hon'--this is just how I walk.

Funny moment #2:  Dr B was checking how stiff my fingers were and I explained how they are when I first wake up and that they were much better now.  He bent them back so that they were touching my forearm.  He gave me this look like, these are stiff???? I explained that normally it doesn't feel like I'm stretching to bend them that much and he gets it but he still thinks it's funny how different I am from the rest of his patients. 

More snow tomorrow and a long car ride, but it's to pick up someone kickass, so I'm looking forward to it.

Sunday, December 27, 2009

Inch of rain

Pain level: 7
Dislocations so far today: none
Subluxations so far today: Right shoulder multiple times, left shoulder once, left wrist twice.
Meds: Naproxen--hardcore dose.
Major complaint: Inflammation and stiffness in morning into afternoon--especially in elbows, spine, hips, and knees.

More weather kicking my ass.  Not going to stay on here long since it hurts too much to sit at a computer right now, but I feel a wreck today.  Hobbling like Igor, everything aching.  Hands are better waking up today than yesterday, but everything else in my body has taken up the slack.  Hopefully it will work itself out as the day goes on.

EDIT:  By evening, condition hasn't really improved at all, but my meds have kicked in so I at least don't care as much that I can barely walk.  That's something right?  Sucks because I really wanted to get some writing done today but I don't have the brain capacity or the wrists/fingers to do more than this.  Seeing my primary care doc tomorrow--we'll see how everything goes.

Saturday, December 26, 2009

Ah, the post Christmas lull

Pain level: 6 now, 7 when I woke up
Dislocations so far today: right index finger is a mess, right shoulder once while sleeping, right ankle once, left wrist once.
Subluxations so far today: Right shoulder multiple times, left shoulder once, right wrist twice.
Meds: Naproxen--hardcore dose.
Major complaint: Inflammation and stiffness in morning--especially hands.

This cold weather is kicking my ass.  We always get up super early Christmas morning and giggle like 4-year-olds until M's mom can get breakfast ready.  This year, alarm went off and I was in so much pain from the joint stiffness, I didn't think I was going to be able to do it.  My hands were so stiff I could barely hold my fork and it hurt to open gifts.  Besides hurting really bad until my meds kicked in (Have I mentioned that it takes 5 hours until my hardcore naproxen starts to take a dent out of the pain?) it was a really nice Christmas.

While over at my parent's house, I dislocated my right index finger while picking up a package.  While trying to pop it back in, I managed to relocate that joint but in the process dislocate the knuckle joint of the same index finger.  UGH.  I put it back, but my finger hasn't be right since.  (Typing sucks.) Still sore as hell and for a few hours it had this awful black bruise-like spot below the first joint that dislocated, but that's gone now.

Today has been the same.  Woke up and just wanted to curl into a ball and stay there. (Didn't, but you know.)  My knuckles were throbbing really terribly and just hurt.  The stiffness is really pronounced.  Normally, I can bend backward every single finger far enough to touch my forearm, but this morning I couldn't even straighten any of my fingers.  I still can't get my fingers to touch my arm, but by now they do go way past 90ยบ.  But I have been sleeping better.  Somehow.  o.O

Wednesday, December 23, 2009

Happy Festivus!

Pain level: 6
Dislocations so far today: none, but it's early.
Subluxations so far today: Right shoulder multiple times, left elbow during the night.
Meds: Naproxen--hardcore dose.
Major complaint: Overall stiffness and back pain.

The pain and stiffness during the night and in the morning when I'm trying to get up is getting worse everyday.  I woke up at one point because I had to adjust my position to relieve some of the pain, and I couldn't make a fist with either of my hands.  I could just barely touch my middle finger to my palm but I couldn't tighten my hand anymore.  Joints just wouldn't move.  I hate winter.

Tuesday, December 22, 2009

Christmas cookies!

Pain level: 6/7
Dislocations so far today: right & left shoulder once each (in my sleep :< ), right wrist once, right ankle once.
Subluxations so far today: Right shoulder multiple times, both ankles a few times.
Meds: Naproxen--average dose.
Major complaint:  Ugh, lower back--muscle and nerve pain, hamstrings are tightening up again despite stretching, joints are very unstable.

M and I made Christmas cookies today like we do every year.  I didn't do too bad most of the day.  Pre-gamed with naproxen, took breaks, and leaned on a lot of things.  But I'm sore as hell now.  My body is experiencing a rise in the hormone relaxin, which sucks since the function of that hormone is to make joints more flexible and loose.  I don't really need that.  So around now my joints are always in more pain anyway. 

I was so pissed last night because I woke up at one point with my left shoulder dislocated which is never a nice way to be woken up.  I put it back in and went back to sleep only to wake up with my OTHER shoulder dislocated.  UGH.  I was sure I was going to wake M up with my swearing.

Joints have been loose all day.  My right fibula keeps sliding back to visit my heel.  He is unwelcome there.

Giant knot on the right side of my back.  It's getting better with heat.  It hurts to much to apply pressure to. The nerve pain is manageable--not anywhere near a stenosis flare up.  I think it has more to do with my hamstrings than anything.  I'm stretching them more, but so far no progress.

Sunday, December 20, 2009

Lax in posting

Pain level: 6
Dislocations so far today: right ankle once
Subluxations so far today: Right shoulder multiple times, left shoulder twice, right ankle twice.
Meds: none
Major complaint: General pain and stiffness.  Some nerve pain down both legs.

Been in rough shape the past few days.  My right foot is still all cramped up and my right shin is still extremely sore but I think the swelling is finally coming down.  Not really in the mood to get into everything else or I think it'll get me down.  Just been feeling the snow and the cold the past few days.

Wednesday, December 16, 2009


Pain level: 4
Dislocations so far today: right wrist once
Subluxations so far today: Right shoulder (multiple times).
Meds: none
Major complaint:  Extremely stiff today waking up. 

Sore all day.  Nothing of interest really.  New bruise on my ankle looks like I colored on the bone with black marker. 

Tuesday, December 15, 2009

Somedays I wish breathing and knees weren't as necessary as they are.

Pain level: 6
Dislocations so far today: none.  (woohoo!)
Subluxations so far today: Right shoulder (multiple times), left shoulder (twice), left scapula once (I hate that one).
Meds: none
Major complaint: Something went seriously wonky with my left knee--not sure what though.  My ribs are still killing me from the dislocation/subluxation.

A rib on my right side subluxed last night--felt like one rib had slide over another and got stuck that way.  It was like that all night until this morning when it finally popped back. Felt like I had a small child squeezing half of my ribcage all night.  Breathing sucks like that--laughing is worse.  But now it's back in place and just super sore from being like that all night.  Extremely tender to touch but I'm no longer relying on shallow breathing.

My left knee gave out on my while I was throwing away a napkin (seriously dangerous activity that).  It felt like my patella shifted to the side and I had this extremely sharp and intense shooting pain radiating from my knee, like a zing of nerve pain.  Then it was gone and now my knee is very tender and has me limping a little.  WTF, knee?  WTF.

Mornings have been getting more and more difficult.  Winter is really here, I guess.  A few hours before I wake up for good in the morning, I've been getting woken up by joint pain in my knees, shoulders,  elbows, back, and hips.  An overwhelming achiness, the kind of feeling that's like, "Good gods, just don't move--maybe it'll go away and we can have a manageable day."  So I go back to sleep with this fear that I'm going to be out of commission that day, but so far when I wake up, the pain has lessened.  A trend I can get behind. 

Monday, December 14, 2009

Occasional post better than nothing?

I am so bad at this.

Update time!
Pain level: 5
Dislocations: Right shoulder once, left scapula once, right wrist twice.
Subluxations: Right ankle twice, right patella, right hip.
Meds: naproxen- normal dose.
Major complaint: Right leg was a mess that day.

All the joints felt so loose and unstable.  I went to get ice to put on my right shin where it is bruised and still swollen but on my way back from the freezer my right patella started to slip out of place (OUCH) so I ended up icing that instead.  Had my left propped up on a second chair and when I got up (I have a bad just-walk-it-off habit), my right hip started to pull out of place (OUCH).  Felt like I was falling apart, my body wouldn't hold together.  I hate that feeling.

Pain level: 4
Dislocations: right ankle twice.
Subluxations: both wrists.
Meds: cold turkey
Major complaint: pain in my mid to upper back all day--muscle/joint pain, not nerves.

It was a pretty good day.  I was limping a little from my sore right leg and the knots in the arch of my foot, but it wasn't terrible.  My back was just generally painful.  Kind of a throb.  The sort of pain that I remember starting about 2 years ago.  It used to put me out of commission.  Now it's just painful, aggravating, and frustrating.  I guess that's a good thing.  Right?

Pain level: 4
Dislocations so far today: none (huzzah!)   Ribs on my right side.  Still not in place.  Bleck.
Subluxations so far today: left shoulder once, right shoulder twice
Meds: cold turkey
Major complaint: neck and shoulders are stiff and sore.  Woke up in the middle of the night with throbbing pain in the middle of my back and feeling like I was being bent in half backwards even though I was curled up forward.  Not gone but much better by morning.

Friday, December 11, 2009

A little sleep is better than nothing

Pain level: 5
Dislocations so far today: ring finger on left hand once, right ankle once.
Subluxations so far today: left scapula once, right wrist once, both shoulders multiple times.
Meds: cold turkey
Major complaint: neck and shoulders very stiff and sore, right leg is sore from bruised/swollen shin, right foot is full of knotted muscles.

Finished Christmas shopping today.  :) And thank goodness because the people out there are insane! 

I fell asleep much faster last night.  I tried sleeping with a microwavable heat pad by my feet which always relaxes me to a brain-coma because it's just so comfy.  I got to sleep around 2, still woke up at around 6 and got back to sleep by 8 so I'm estimating that I got between 5-6 hours which isn't awesome but isn't immensely shitty either. Will try the heating pad again tonight.  I'm feeling a little more rested but I'm still in a brain fog and emotionally incompetent.  *seppuku*

Thursday, December 10, 2009

My internet connection is made of FAIL™

A flaw of doing this online
  • When my internet connection is taking a personal day at the spa, I can't get on here to post.  Could I record on a Word doc and then transfer over at a later date?  Sure, but instead I poke at my wireless card incessantly and play bubble trouble on my Dashboard.  Need to work on that.
Pain level: 4
Dislocations so far today: none (yipee!)
Subluxations so far today: ribs on the left side few times, left wrist once, right wrist (3), both shoulders multiple times, right ankle once, left elbow once.
Meds: cold turkey
Major complaint: INSOMNIA, muscle spasms in my neck and shoulders, loose hips.

I did my Christmas shopping in the past couple of days--had a clusterfuck of malls and giftbuying so I'm all but done now which is cool.  Got to try out my new chair (Quickie GTi) and it maneuvers incredibly well.  I used the chair for the most of the stores to save my back/legs from sending me into a flareup and so far so good.  :)  Other shops are just set up so badly that using even this new super small chair just wasn't an option--wouldn't have been able to get around.  My arms are a little sore from the use, the muscles tight.

I've got these muscles on either side of my neck that keep spasming, but they are so close to my throat that when I press on them to stop the spasms, I start to feel dizzy because I'm pressing on my arteries.  And my brain likes bloodflow.  They've been keeping me up.

Speaking of which: INSOMNIA.  It's driving me up the wall.  I've had insomnia most of my life and it crops up as being more intrusive in my life than other times.  Now would be one of those times.  Can't fall asleep.  When I do I'm up again within the hour.  Been trying all the normal tricks.  Even Tylenol PM isn't helping which I don't like to take in general anyway.   The muscle cramps and spasms aren't helping either.  Can't wait to see my doc on the 28th.  I feel disoriented and run down and feel like I have the emotional capacity of a cocker spaniel.   Not a good combination.

Monday, December 7, 2009

Already a forgettful idiot

So I already forgot to do an entry yesterday.  Not like I didn't have access to a computer yesterday, I just didn't log in to this thing.  Oh well. Go me.  Nothing huge to report about yesterday.  Normal dislocation/subluxation shit.  Average pain level.  I kept having a bunch of Raynaud's episodes on both hands, but it was cold.  So here's today's.

Pain level: 4
Dislocations so far today: Left elbow once, middle finger on left hand once.
Subluxations so far today: Right shoulder once, left elbow once, ribs on left side of sternum off and on.
Meds: cold turkey
Major complaint: there's a really tight muscle/knot on the arch of my right foot that is giving me trouble and my neck is sore. 

Nothing too interesting to report.  I'm getting a lot of numbness down my arms while I sleep.  Doesn't matter how many times I adjust my position when I'm trying to sleep to one that won't end up with me having dead-arm, I always shift in my sleep so that I'm laying with my arm curled and tucked under me, and I wake up not being able to feel my whole arm. 

Successfully grocery shopped with only the cart for stability.  Foot is sore and I'm working on the knot but nothing giving yet.  Like I said, nothing interesting to report, which isn't always a bad thing.

Saturday, December 5, 2009

first snow of the season

Pain level: 5
Dislocations so far today: Right shoulder once (while sleeping), right ankle once twice.
Subluxations so far today: Right shoulder (2 times), right patella once.
Meds: cold turkey
Major complaint: Woke up stiff from the snow coming in.  Just feeling achy all over.

Didn't sleep well last night either--it felt like my SI joint was clicking and making me very uncomfortable in any position.  No spasms though, that's a plus.

Lost feeling of the first three fingers on my right hand from Raynaud's for about 10 minutes.  By now, M is a pro and getting sensation back in them.  I've been taking stairs at my average pace again so I guess my knees have finally forgiven me.

The most aggravating thing right now is that I have a really bad case of brain fog.  I feel like I've been drugged or taken cold medicine--like my brain is underwater and I can't form clear thoughts.  My thoughts feel slow and sluggish.  I can't remember the names of things or follow what people say if they say more than a sentence or two.  I probably just need more sleep.  It's extremely frustrating because I can't do the things I want to do because I just can't figure them out.  And they're things I know I can normally do--things I've done before and when I can't do them I get stressed out and end up feeling dissapointed in myself which doesn't help anything.   Things get blurry, lights seem too bright, and I feel like I'm blinking really slowly.  All in all, it makes it hard to be productive.

Friday, December 4, 2009

off for the evening

Pain level: 5
Dislocations so far today: none (yippee!)
Subluxations so far today: Right shoulder (3 times), right ankle (2 times), left elbow once.
Meds: Naproxen - normal dose.
Major complaint:  Pain at and just above my spinal fusion, tightness in hamstrings with manageable pain down sciatic nerve in both legs.

Heading out in a bit for the evening at a friend's house.  Always a little nervous when I go out for long car rides since that can sometimes trigger flare ups.  It makes me feel like a total spaz.

Slept like hell last night.  I was getting muscles spasms in my legs most of the night, which means I really need to start stretching again.  No putting this shit off.  So I did and it hurt like mad, but as long as I keep it up, I should be better shape within 3-4 weeks.  Sleep is important--need to get me some. 

Joints are louder than usually today.  Everytime I pop something, it sounds like breaking a broomstick in half.  Stairs are better today, but standing in one place is still very difficult. 

Thursday, December 3, 2009

First Entry--you know how it is.

I was born with Ehlers Danlos Syndrome, Hypermobility Type.  And if you've never heard of it, that's  okay.  Most of the doctors I've seen don't know about it either.  EDS is what is often called an "orphan disease," referring to a medical condition that is so rare that doctors barely ever see it in person, let alone treat it.  Like the medical community has abandoned it.  As a result I developed symptoms at the age of 10, but was not diagnosed until I was 23.

Super-quick oversimplied sum up: EDS is a collagen disorder, collagen being a protein that holds your body together.  My body doesn't make enough of it, so my body tends to fall apart.  I am too flexible.  I dislocate multiple joints often while doing small things like opening a door.  It's a chronic pain disorder and all the fun stuff that comes with it.  In addition throw in lumbar spinal stenosis, scoliosis, congenital lumbar spinal fusion, etc. You get the idea.

ANYWAY.  I'm not here to lecture about EDS, but I figured that if someone pulled this up to read, I might as well give them a tiny intro before I start the log for myself.    I have been meaning to start keeping a log for a while--something I can refer back to when doctors ask how often does this come up and that kind of thing.  But I suck at grabbing a notebook and writing stuff down.  However, I can  spend a few minutes on friggin Farmville everyday, hence the verdict is to do this online.  So, now: on to business.

Pain level: 6/7
Dislocations so far today: Right wrist once
Subluxations so far today: Right shoulder (4-5 times), right ankle once.
Meds: Naproxen- normal dose.

Major complaint: inflammation of knees, pain in C7 area of spine.

It's been two days since the epically scary elevator dropping 2-3 feet escapade and my knees are at the height of the whatthefuckdidyoudo??? stage.  They keep giving out on me.  Wife says I look like I'm "dropping it down" and hip hop dancing when I walk, but really just one of my legs won't hold.  At least look cute when I hobble, right?

Stairs suck today.  I'm going down them by sitting on each step.  Going up on my knees. Yeah, I'm keepin' it classy.  Standing Max. today is about 5 minutes.  10 minutes if I have a wall to lean on. 

Spine is sporadically iffy today.  Getting nerve pain down one leg for no damn reason.  Just these zings even when I'm not moving at all.  Like when my knees bug me, my back's like, "Hey!  I'm still here too!"

C7 area of my neck is sore.  Feels almost heavy which doesn't really make sense.  Stiff probably.  I keep adjusting my posture so I don't piss my neck off anymore than I have to.