wow. mall. cool.

Pain level: 5
Dislocations so far today: right shoulder once, left index finger once
Subluxations so far today: right shoulder a few times, left shoulder once
Meds: naproxen, hardcore dose.
Major complaint: morning stiffness, back still sore

I think I did pretty damn well today.  Back muscles still feel a little pulled, but my two days without PT has really helped that.  I've been sleeping well even without taking any more of those meds.  And I walked around the mall today. (!!!)  I'm not sure I remember the last time I walked around the mall on my own.  It's been a few years, I'd bet.  I'm sore now and on the cane, but I'm happy I pushed myself to walk a bit more than is usual for me.  I'll likely start back in on my PT today unless M lectures me to take one more day off just in case. 

Also, talked to my mom today, and it turns out she also has a prolapse.  So that's three generations (me, my mom, and my grandmother), three prolapses, and three different organ systems.  Wow.  Anyone else still trying to figure out which side my EDS came from?  Yeah, me either. 

Hand stiffness using middle finger as a measure.
Time: 10:19 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 120º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 85º
Angle of extension of last joint of finger: 115º 

Yes, drowsiness is DEFINITELY a side effect.

Pain level: 5
Dislocations so far today: right shoulder
Subluxations so far today: right shoulder a few times,  left elbow.
Meds: naproxen, hardcore dose, leftover Amitriptyline from last night
Major complaint: pulled muscle in my right lumbar area, drowsiness.

I ended up taking 1/2 of my 25mg Amitriptyline last night around midnight.  That ends up being 10 mg and change.  That was plenty.  I might actually go down to a quarter of a pill next time I need it.  I was zonked out by 1 AM and slept heavily until 9AM then dozed in and out until 11 or so.  And that shit stayed with me.  I was a groggy brainless zombie until around 5PM.  Felt almost drunk, slurred speech, dizzy, the whole bit.  But Dr. B. warned me that the first few times I take it that I should consider the next day a loss until my body gets used to it.  Not used to taking meds FOR the side effects, but hey--doctor's orders.

Woke up with an internal tremor (usually get that when my muscles relax too much) and what feels like a pulled muscle in the right part of my lower back.  It's been throwing my walking off today but not like it normally does.  A different kind of pain--not as bad on the pain scale but somehow harder to walk around with. 

Nothing else really of note today.   Woke up with hand stiffness and pain again.  More raynaud's but it's 11 degrees F out there today, so that's bound to happen.

Fun tidbit--This is a conversation M and I had right after I woke up.

Me: It's like I can feel some things and not feel other things. 

M: Hm. So what things can you feel? 

Me: (long pause) Coherency.

M: Yeah? You can? 

Me: No--I can't. 

M: I asked you what things you could feel. 

Me: Oh. (long pause) See??

 

Hand stiffness using middle finger as a measure.
Time: 10:51 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 95º
Angle of extension of last joint of finger: 120º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 80º
Angle of extension of last joint of finger: 110º 

ball of nerves

Pain level: 5
Dislocations so far today: none (yay!)
Subluxations so far today: right shoulder a few times, right and left elbow,  right index finger.
Meds: naproxen, hardcore dose.  Going to try Amitriptyline, my sleeping meds, tonight--1/2-1 tablet.
Major complaint: stiffness and throbbing of hands in the morning, worrying too much

Pain in my hands woke me up in the middle of the night.  What fun.  Slept like hell.  I plan on seeing how I react to the Amitriptyline and hope that it knocks me out for a good night's sleep.  Hands were better today than yesterday.  I think taking a hot shower as soon as I got out of bed helped.  I could make a fist by 10:30 with both hands.  That's pretty good.  And the sharp pain when pressing down on my joints is much less.  But mobility is less than yesterday.  Weird.

Raynaud's is going crazy today. Well, really it's only been one attack, but it was a big one.   Had to take the dog out and she can't be trusted recently to go in her yard and do her business, so I went out with her to coax her in the right area.  May have been outside for about 1 minute tops.  It was snowing and around 25ºF.  As soon as I got inside my hands started to feel off.  They weren't numb yet but much lighter than my skintone.  In 5-10 minutes every finger and both thumbs were as white as a sheet of paper.  I ran them under warm water and tried biting on them but nothing happened.  Tried to ignore it and eat my dinner but when I couldn't hold my fork I tried more.  They started turning blue, but then the feeling started coming back.  They turned bright effing red with a little purple in a few fingers and burned like mad.  Overall, they were probably gone for about 20 minutes.  It sucked. 

I saw the dentist today and things went better than expected.  I bled a ton less and she said my gums were looking much better than before and to keep up whatever I was doing differently.  I haven't done anything differently.  She just didn't stab me in the gums so much this time.  But I just said "Oh good!" and "I'll do that."

I need to learn to calm myself the hell down.  Sure, the ANA test results have me freaked, but researching every autoimmune disorder isn't going to help anything so cut it the hell out, you shmuck.  Also, no matter how much I hate Lowell, that's where all my doctors are so I need to just man up and stop having random panic attacks about the fact that I'll have to have M drive me into Lowell in 3 weeks.  It's in 3 weeks, dude.  Sure you'd rather it were here tomorrow so it can be over with, but it's not so just stop worrying until it's here.  Seriously.  Calm the hell down.  Chill.  But not too much, or else your hands might turn all white and funky.   

Hand stiffness using middle finger as a measure.
Time: 9:08 PM
L
Can touch forearm? Yes, but only just barely and with discomfort.
Angle of extension of center joint of finger: 85º
Angle of extension of last joint of finger: 120º
R
Can touch forearm? No. about an inch off
Angle of extension of center joint of finger: 80º
Angle of extension of last joint of finger: 115º

Back to your regularly scheduled programing--I hope.

Two days in a row--keep it up, dude.

Pain level: 6
Dislocations so far today: left wrist, right elbow.
Subluxations so far today: right shoulder a few times, left shoulder, right elbow, ribs on right side where they meet my spine.
Meds: naproxen, hardcore dose.
Major complaint: stiffness and throbbing in the morning, left knee is being bullshit for no reason.

Paying more attention to my hands now, trying to keep track of when they become more mobile. 
Woke up at 8AM and couldn't straighten or make a fist with either hand.  By 10:30AM I had full mobility but very little strength in my left hand.  By 11AM I was able to straighten my right hand with the help of M stretching my fingers out.  By 12:30PM I was able to hold a glass of water using only one hand (either)--before I had to hold it with two.  By 1:30PM I could make a fist with my right hand.  Got full strength back in my left hand sometime this afternoon.  It's 10:55PM now and I still dont' have full strength in my right hand.  That's sort of how it's going down.  The pain is moderate in the joints of both hands.  A warm throbbing dull ache which becomes sharp and makes me flinch at the severity when I press down on my fingers.  Joints are very tender to the touch.  It gets easier as the day progresses and then picks right back up in the morning.  But it hurts to hold M's hand and that's probably the worst part.

Called Social Security again today.  Maybe they'll return my call this time.

Seeing my dentist for a cleaning tomorrow.  Not looking forward to it since this woman has a tendency to scold me for not flossing enough because of how much my mouth bleeds when she pokes it with a fucking steel hook.  I'm crazy obsessive with my flossing/brushing.  M makes fun of me all the time.  If I flossed any more, I wouldn't be able to leave the house.  She doesn't seem to grasp the I-have-a-condition-that-causes-increased-bleeding concept.  Wish me luck.

Hand stiffness using middle finger as a measure.
Time: 11:01 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 115º
R
Can touch forearm? No. about an inch off
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 110º

PS:  my keyboard is complete fail right now.  I often have to press a key about 10 times to get one letter to come out.  And my backspace key only works when it feels like it.  I'm a writer.  I have a fiction piece I'm trying to work on.  This is driving me crazy.  You know, add that to the messed up fingers and we've got a party in the works.

Where's House?

I have been fail at writing on here.  I will try very much to do a better job.

Pain level: 6/7
Dislocations so far today: Left shoulder, left elbow, right ankle.
Subluxations so far today: right shoulder a few times, right elbow once, left wrist once.
Meds: naproxen, hardcore dose.
Major complaint: pain at spinal fusion, stiffness in the morning.

Productive update:  I'm filing paperwork to get my exception from losing my health insurance.  All fingers and limbs are crossed.

Not fun update:  The test results of my bloodwork could have been more awesome and normal.

• Good news: My Rheumatoid factor is negative.  (YAY!)
• Good news:  My sed rate (ESR) is normal.  (YAY!)
• Good news: My thyroid is awesomesauce.  (YAY!)
• Good news: No anemia. (YAY!)
• Bad news: My ANA titer is way high.

 I've had these tests done a bunch of times and they are generally normalish/low.
2 years ago I had a positive Rheumatoid factor and a normal ANA titer (less than 1:40). 

Last year I had a negative Rheumatoid factor and a positive but low ANA titer (less than 1:80).

For an ANA titer to be considered high it must be greater than 1:640.  This january my ANA was 1:1280.  Uh, hey now.  No need to be jumpin' up there so fast, antinuclear antibodies.  Settle down.

That high a rate is rarely a false positive, meaning I've got some sort of autoimmune problem going on.  That level of ANA and the pattern (homogeneous) are consistent with Lupus and Mixed Connective Tissue Disease (MCTD).  Great.  So now there's a chance I might have Lupus.  I want to see House.  It's never lupus when he's around.

It's got me and M pretty scared.  As M put it, things like EDSIII suck and are degenerative, but they aren't fatal so we know that we can always work through them together and be okay if not "whole".  Lupus is another animal.

Trying to stay positive and calm and just wait out the 3 weeks until we see the Rheumatologist, but it isn't easy some days. 

Joint wise:  Raynaud's has been ever present, nerve pain is coming and going, back pain is normal to worse,  and I'm generally feeling run down.  So, in general not a whole lot new to report. 

Oh and Social Security is so not returning my calls which is annoying.  Guess I'll go leave them another message.

Hand stiffness using middle finger as a measure.
Time: 8:43 PM
L
Can touch forearm? Yes and could since 10:30 AM
Angle of extension of center joint of finger: 85º
Angle of extension of last joint of finger: 120º
R
Can touch forearm? No. over an inch off
Angle of extension of center joint of finger: 80º
Angle of extension of last joint of finger: 110º

PS:  no idea why there is a bullet at the end of my entry.  wtf.

Walking= vetoed by spine.

Pain level: 8
Dislocations so far today: none
Subluxations so far today: right shoulder a few times, left elbow once, right index finger once.
Meds: naproxen, hardcore dose.  Tramadol-wooziness from last night.  Took one around midnight and was loopy until around 2/3 PM. 
Major complaint: stenosis pain and strained back muscles.

Hahahaha--yeah.  Things have been better.  I didn't post on here because things were sort of average and I was having continual, if minor, freakouts over the insurance issue.  Then Friday night we got a call at 4 in the morning that M's sister (who is post surgery and lives downstairs) needed us.  We both shot up and bolted downstairs.  Turned out to be minor which is good.  But with my joints--when I wake up in the morning, I normally need to take about 45 minutes until I am able to stand up.  So bolting downstairs thinking something was horribly the matter was what we call a bad plan.  I fell right back to sleep, but when I woke up in the morning I knew I was in for hell.  Pain level was a steady 9 the whole day.
It felt like all of my core stability muscles had seized up and I was getting nerve pain from my stenosis even without moving my back so I knew that my spinal cord was inflamed.  That's not fun shit.  (Not a full blown flare up, thank god.)  My left leg was crazy painful and my right leg was pretty much gone.  If I straightened my back even a little from my general hunch, I would lose my right leg all together, it wouldn't take weight at all.  So I dragged myself from bed to bathroom to chair and that was about as much as I did.  I took tramadol at night so I slept like a baby thankfully. 

This morning is much better. Still hunched over and get really bad nerve pain when I straighten up, but I can walk today without putting 70% of my weight on M or a bookcase or something.  I'm moving really really slow, and my steps are like 3 inches at a time, but my legs are taking weight (right isn't taking full weight yet), and I can move around and get up and down stairs as long as I do it while sitting.  That's progress at least.

The giant f-ing snowstorm coming in tonight isn't helping I'm sure.  :<

Just had a bout of Raynauds while typing.  Right hand, index, ring, and pinky finger. What fun.  We recently figured out that biting on the numb fingers until they hurt like hell will generally get the blood flowing into them again.  Like my body is going, shit man!  What the hell was that!  Ow!  Quick, send some troops in to see what the deuce is going on!  Hey, whatever you got to do, right?

Hand stiffness using middle finger as a measure.
Time: 9:59 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 100º
Angle of extension of last joint of finger: 130º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 110º 

Bad couple of days.

Pain level: 6 this morning, 5 by now
Dislocations so far today: left shoulder once, left wrist once.
Subluxations so far today: right shoulder a few times, left shoulder once, right elbow once.
Meds: naproxen, hardcore dose.  Might start on new insomnia med tonight.
Major complaint: stiffness, pain in shoulders and neck.

Haven't kept us as much as I mean to, but things have been hectic and just got hectic-er.  My left side is a mess today.  Dislocated my left shoulder taking off my hoodie and maybe an hour later dislocated my left wrist while trying to pop the joint like I normally do when it feels stiff. 

Past couple of days my fingers have been feeling less stiff during the day.  In the morning and before I wake up for good, they still hurt like all hell and I can't make a fist. 

Muscles in my shoulders were insanely tender this week.  I'd touch them, and it made me almost cry pain tears.  But that has faded to.

The fun news:  My health insurance is supposed to cover me until I am 25.  I turn 24 next month.  Turns out that my insurance changed its policies effective pretty much now these new ones say that I am going to lose my insurance at the end of next month.  So I have 49 days left until I am without insurance, as opposed to the YEAR I was figuring I had to work things out.  Nope.  49 days.  There is an exception we are applying for that will cover me until I'm 26 if I'm deemed disabled and the condition existed before I was 19.  This is all very true--but what's scary is all the doctors I was seeing until last year knew nothing about EDS and all thought I was crazy.  Here's hoping my current doctor's opinion is the only one that matters.

Attempting not to stress out too much about this whole thing.  Failing miserably. 


Hand stiffness using middle finger as a measure.
Time: 10:28 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 100º
Angle of extension of last joint of finger: 120º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 110º 

A day without snow!

Pain level: 6 this morning, 5 by now
Dislocations so far today: couple of fingers on my left hand, left ankle once.
Subluxations so far today: right shoulder a few times, left shoulder once or twice, both elbows once.
Meds: naproxen, hardcore dose.  Tramadol the night before.
Major complaint: lower back pain that started last night and is only starting to fade.

There are 3 things that I have to do everyday that I CANNOT forget to do.

1. Do my PT stretches.
2. Remember to pace myself and take breaks to sit and rest even if I feel like I'm doing fine.
3. Take my anti-inflammatories in the morning before I even need them.
   

Guess how many of these I forgot to do yesterday?
Yep.  All of them.  UGH.  I'm such an ass sometimes.  I was stiff and sore in the morning, but that seemed to ease up over the day.  I got my blood drawn in the morning so I didn't take my naproxen in case that somehow affected the bloodwork, and when I got home I forgot.  M and I made turkey stock from scratch yesterday, and I guess I was on my feet too much.  Around 9 when I helping her strain the stock, my back just sort of freaked out.  The pain just came running at me and took over and I had to go sit down.  Couldn't fall asleep because I was trying to figure out if I was about to vomit from the pain.  Took a tramadol and that knocked the pain down enough so that I could sleep. 

I was woozy this morning and still hurting but not nearly as bad.  Took it easy today.  Remembered to take breaks and my meds. 

Raynaud's is really acting up today.  Been losing 3/4 of my fingers at least once an hour. 

Hand stiffness using middle finger as a measure.
Time: 7:21 PM
L
Can touch forearm? Yes, pretty easily.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 130º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 80º
Angle of extension of last joint of finger: 110º

Guess what's in the forecast for tomorrow.

Pain level: 6 this morning, 5 by now
Dislocations so far today: right ulna at the wrist, middle joint of middle finger on left hand. Subluxations so far today: Right shoulder twice, right elbow once, right hip once. ribs have been moving around.
Meds: naproxen, hardcore dose.
Major complaint: Pain in my right hip, this morning pain in lower back.

Woke up before dawn this morning and when I tried to flex my fingers the pain was so sharp it scared me.  By morning I could move my hands okay though.  Fingers are less stiff today, or at least feel it.  Lower back was giving me real trouble walking but the walk-it-off method seemed to work and the muscles stretched out.  Back to PT exercises. 
SI joint has been clicking all day, threatening to pop out.
My right hip subluxed last night and it has been bothering me since.  Nothing to really do for it besides not run any marathons.  check and check.

Hand stiffness using middle finger as a measure.
Time: 11:37 PM
L
Can touch forearm? Yes
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 130º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 70º
Angle of extension of last joint of finger: 110º

Snow just keeps coming

Pain level: 5
Dislocations so far today: none.
Subluxations so far today: Right shoulder twice, left shoulder once, left elbow once.
Meds: naproxen, hardcore dose.
Major complaint:  Stiffness and pain in my hands.

Winter wonderland out there.  My hands are killing me.  Winter is always my worse season for joints and when it snows, it's sort of like nature spitting on me.  Putting most of my effort today into not  being a gloomy bastard.  Why is it so hard not to worry?

Hand stiffness using middle finger as a measure.
Time: 11:02 AM
L
Can touch forearm? Just barely
Angle of extension of center joint of finger: 60º
Angle of extension of last joint of finger: 110º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 60º
Angle of extension of last joint of finger: 100º 

Okay, seriously sick of snow now.

Pain level: 5/6 but most of it is muscular so it's not hard to manage.
Dislocations so far today: none.
Subluxations so far today: Right shoulder multiple times, left shoulder three times,  right wrist once.
Meds: naproxen, hardcore dose.
Major complaint: stiffness and pain all day especially in morning and in my right hand.

I'm ready for May.  Supposed to get another 6-12 inches of snow in the next two days.  UGH.

I'm made of muscle ache today--woke up with feeling like I had pulled my shoulders and most of my  back.  Well, you shoveled, asshole.  Should I expect anything different no matter how little I shoveled?  Bleck.  At least it's a pain that doesn't bother me as much as other ones.

Started my new Naproxen meds today, they don't have a coating like the one's Dr. A gave me, but so far no stomach issues.

My right hand is killing me.  The joints are super stiff and aching all the time and tender to touch.  It hurts to hold M's hand, which is completely unacceptable in my opinion. 

Had a small break in my defenses last night:  I try not to think about how I will be in 10 years, 5 years, 6 months.  It's too fucking scary.  But the new year and how this new achy pain has been has got me even more scared.  Had a small cry and tried to push past it.  I hate the fear I get.  I know, no matter what I'll fight my ass off to live with this and I know M will always be there, but the fear is still there.  I think about arthritis and losing my hands; I'm a writer--I need them to type.  I think about holding M's hand and losing that.  For some reason this scares me more than ending up full time in my wheelchair.  I'm ready to see that Rheumatologist right now.  Ready to know what's going on.  Is this just all the snow?  The cold?  A new symptom of the EDS? Or is it RA?  Why can't I just be Zen about it?

Anyway:  I'm adding a new set of things to keep a log of so I can track the stiffness of my hands.  Might modify this when I see how it seems to be working out.

Hand stiffness using middle finger as a measure.
Time: 5:57 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 70º
Angle of extension of last joint of finger: 130º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 50º
Angle of extension of last joint of finger: 100º