Pain level: 5
Dislocations so far today: none yet
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.
Major complaint: more stiffness/pain/swelling in the joints of my hand (R>L)
Ended up coming home last night after all since the storm had cleared up. And when I say "last night" I only mean that it was before we had gone to sleep. We got home around 5AM and watched the sun start to come up on the drive. We were planning on crashing at Mr. C's because of the sleet/snow but since that was a nonissue, M was too worried about how my back would take to sleeping on an air mattress without my usual fortress of pillows. She was concerned I would wake up unable to walk, so home we went. Probably smart of her.
But now we don't know which way is up. I hope we can get back to a normal sleeping schedule.
Hands were more painful/stiff than normal this morning. When I'd try to make a fist, it felt like my cuticles were pulling away from my nails. Ew. I figure it's because the meds were not as fresh in my system as when I'm taking them at 6PM and waking up by 9AM at the latest. Let's just say we didn't wake up at 9AM after going to bed at 5AM.
Got advice today about Disability Benefits. Since I first called them at the end of January and they still haven't called to make an appointment (except for the one time they called in January when my phone was out of battery and I followed their call-us-back instructions immediately, but no luck getting another call), I have been advised to call the Office of the Attorney General for my state and both of my state's Senators and inform them of my situation.
D:
Well, if that's not intimidating--perhaps more so than filing for disability--than I don't know what is. Yikes. Wish me luck!
Hand stiffness using middle finger has measure
Time: 3:22 PM
Can touch forearm? Just barely--and OW!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 115º
R
Can touch forearm? not even close and MAN! that hurts
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 105º
Sunday, February 28, 2010
Saturday, February 27, 2010
Off for the night
Pain level: 4/5
Dislocations so far today: my fingers keep popping out
Subluxations so far today: Right shoulder a couple of times, right hip is threatening
Meds: meloxicam--1 tablet.
Major complaint: some stiffness/pain/swelling in the joints of my hand (R>L)
Off to Mr C's place for a night of friends, 20-sided dice, and a few drinks. Be back sometime tomorrow. I'm always a bit freaked when I spend a night away from home, worrying about how the inflate-a-bed thing will affect my back, but I'm also sick of not doing things because of anticipated pain. (Though I am reminded that getting frustrated at pacing/taking my condition into account and just throwing caution to the wind is what landed me in the ER last year, so I am trying to find a balance.)
No repeat of the random hive-like itching on my hands this morning, so I have no idea what the heck that was about yesterday.
Fun Fact: This is M's methodology of figuring out if she needs to be worried about my health at any given time. If I swear and curse a bunch, I'm probably fine. ("fine" as in stubbed my toe or dislocated something that I can put back in no problem like a finger or ankle.) However, if I get very quiet and calmly ask for her assistance, she deems that is when to freak out. Like when a few days ago when I popped out my hip, I very calmly called out, "honey--I need your help," that is, I guess, how to worry her. Oops. I really hate worrying people. Guess I just need to yell and swear more then.
Hand stiffness using middle finger has measure
Time: 4:40 PM
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 75º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? closer than normal, but still no
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 115º
Dislocations so far today: my fingers keep popping out
Subluxations so far today: Right shoulder a couple of times, right hip is threatening
Meds: meloxicam--1 tablet.
Major complaint: some stiffness/pain/swelling in the joints of my hand (R>L)
Off to Mr C's place for a night of friends, 20-sided dice, and a few drinks. Be back sometime tomorrow. I'm always a bit freaked when I spend a night away from home, worrying about how the inflate-a-bed thing will affect my back, but I'm also sick of not doing things because of anticipated pain. (Though I am reminded that getting frustrated at pacing/taking my condition into account and just throwing caution to the wind is what landed me in the ER last year, so I am trying to find a balance.)
No repeat of the random hive-like itching on my hands this morning, so I have no idea what the heck that was about yesterday.
Fun Fact: This is M's methodology of figuring out if she needs to be worried about my health at any given time. If I swear and curse a bunch, I'm probably fine. ("fine" as in stubbed my toe or dislocated something that I can put back in no problem like a finger or ankle.) However, if I get very quiet and calmly ask for her assistance, she deems that is when to freak out. Like when a few days ago when I popped out my hip, I very calmly called out, "honey--I need your help," that is, I guess, how to worry her. Oops. I really hate worrying people. Guess I just need to yell and swear more then.
Hand stiffness using middle finger has measure
Time: 4:40 PM
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 75º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? closer than normal, but still no
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 115º
Friday, February 26, 2010
A Snowicane. Really.
Pain level: 5
Dislocations so far today: right elbow this morning, left hip last night (OW!)
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.
Major complaint: some stiffness/pain/swelling in the joints of my hand (R>L)
I've been sort of a mess the past few days from the rain so I haven't been on here. Wednesday night I had a repeat of probably what I feel is the most annoying dislocation-scenario of having Ehlers Danlos. I dislocated my thumb while pulling up my pants after using the bathroom. Ugh. I really hate that. I had that happen to me twice in one week last year and I was just so pissed off because it's such a simple task that becomes complicated quite quickly. I then had this conversation with M's mom.
Me: I dislocated my thumb again while pulling up my pants.
A: UGH. You know, the last time this happened it was raining like crazy too. When it rains, you're just not allowed to wear zippers!
Me: I was wearing my pj pants.
A: *laughing* Well, I'm sorry but that's just pathetic! Okay, so when it rains, you're just not allowed to wear pants!
She may be on to something. XD
My back has been completely out of it from the Snowicane. Like a hurricane, but with snow. Yuck. Not even worth talking about--just my standard low pressure system pain. But that's better now. More snow/sleet/rain expected through Monday, but I think the worst is over.
I've been getting some more/new hand symptoms the past few days. The pain/swelling is down still, and I think the stiffness is too, but when I first wake up my right hand feels so weak that it can't make a full fist. The fingers don't feel stiff, just tired almost. Limp. Plus my hands woke me up before sunrise itching and hurting from itching so much that I was sure I had hives. Big ones. I turned the light on and they looked fine, but they had that stinging feeling you get with really bad hives or a bad sunburn. But only on my hands and it was gone later. Weird. No idea what that means.
Hand stiffness using middle finger has measure
Time: 4:40 PM
Can touch forearm? Just barely/ same
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? Not even close--and OW it hurts to try!/ same
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º
Dislocations so far today: right elbow this morning, left hip last night (OW!)
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.
Major complaint: some stiffness/pain/swelling in the joints of my hand (R>L)
I've been sort of a mess the past few days from the rain so I haven't been on here. Wednesday night I had a repeat of probably what I feel is the most annoying dislocation-scenario of having Ehlers Danlos. I dislocated my thumb while pulling up my pants after using the bathroom. Ugh. I really hate that. I had that happen to me twice in one week last year and I was just so pissed off because it's such a simple task that becomes complicated quite quickly. I then had this conversation with M's mom.
Me: I dislocated my thumb again while pulling up my pants.
A: UGH. You know, the last time this happened it was raining like crazy too. When it rains, you're just not allowed to wear zippers!
Me: I was wearing my pj pants.
A: *laughing* Well, I'm sorry but that's just pathetic! Okay, so when it rains, you're just not allowed to wear pants!
She may be on to something. XD
My back has been completely out of it from the Snowicane. Like a hurricane, but with snow. Yuck. Not even worth talking about--just my standard low pressure system pain. But that's better now. More snow/sleet/rain expected through Monday, but I think the worst is over.
I've been getting some more/new hand symptoms the past few days. The pain/swelling is down still, and I think the stiffness is too, but when I first wake up my right hand feels so weak that it can't make a full fist. The fingers don't feel stiff, just tired almost. Limp. Plus my hands woke me up before sunrise itching and hurting from itching so much that I was sure I had hives. Big ones. I turned the light on and they looked fine, but they had that stinging feeling you get with really bad hives or a bad sunburn. But only on my hands and it was gone later. Weird. No idea what that means.
Hand stiffness using middle finger has measure
Time: 4:40 PM
Can touch forearm? Just barely/ same
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? Not even close--and OW it hurts to try!/ same
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º
Tuesday, February 23, 2010
Ow ow snow ow
Pain level: 6/7 as long as I walk like an idiot
Dislocations so far today: right index finger again! jeez!
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.
Major complaint: Lumbar spine pain with some nerve pain down my left leg, some stiffness/pain/swelling in the joints of my hand (R>L)
And the snow is just starting to come down now. The flakes are wet and sloppy, splattering against the deck. Yuck. It's not supposed to really stop until Sunday.
EDIT: We're getting rain currently. Wish that made a big difference. But hey! No shoveling!
It took me a long time to wake up this morning. I was awake off and on since 6am or so, just trying to sleep off a little bit more of the pain, hoping to wake up again in better shape. That didn't really happen today. Took me a while until I could uncurl myself enough to stand up. I'm walking very slowly today, and each step is probably only 3-4 inches. I'm "sneaking" today--that's what M calls it when my back is so bad I can't walk faster than that. Like I'm some sneaky burglar hoping no one notices me. XD
Having a little nerve pain involvement with my back pain today--mostly when I cough or sneeze I"ll get it down my left leg.
Two episodes of Raynaud's already today. I'm trying to keep my hands warm.
Hand stiffness using middle finger has measure
Time: 12:27 PM / 11:15PM
L
Can touch forearm? Just barely/ same
Angle of extension of the center joint of finger: 60º/ 70º
Angle of extension of the last joint of finger: 110º/ 120º
R
Can touch forearm? Not even close--and OW it hurts to try!/ same
Angle of extension of the center joint of finger: 50º/ 60º
Angle of extension of the last joint of finger: 100º/ 115º
Dislocations so far today: right index finger again! jeez!
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.
Major complaint: Lumbar spine pain with some nerve pain down my left leg, some stiffness/pain/swelling in the joints of my hand (R>L)
And the snow is just starting to come down now. The flakes are wet and sloppy, splattering against the deck. Yuck. It's not supposed to really stop until Sunday.
EDIT: We're getting rain currently. Wish that made a big difference. But hey! No shoveling!
It took me a long time to wake up this morning. I was awake off and on since 6am or so, just trying to sleep off a little bit more of the pain, hoping to wake up again in better shape. That didn't really happen today. Took me a while until I could uncurl myself enough to stand up. I'm walking very slowly today, and each step is probably only 3-4 inches. I'm "sneaking" today--that's what M calls it when my back is so bad I can't walk faster than that. Like I'm some sneaky burglar hoping no one notices me. XD
Having a little nerve pain involvement with my back pain today--mostly when I cough or sneeze I"ll get it down my left leg.
Two episodes of Raynaud's already today. I'm trying to keep my hands warm.
Hand stiffness using middle finger has measure
Time: 12:27 PM / 11:15PM
L
Can touch forearm? Just barely/ same
Angle of extension of the center joint of finger: 60º/ 70º
Angle of extension of the last joint of finger: 110º/ 120º
R
Can touch forearm? Not even close--and OW it hurts to try!/ same
Angle of extension of the center joint of finger: 50º/ 60º
Angle of extension of the last joint of finger: 100º/ 115º
Monday, February 22, 2010
Back to computin'
Pain level: 4
Dislocations so far today: right index finger again, (ow!) just dislocated my right index finger while typing)
Subluxations so far today: Right shoulder a few times, left shoulder once
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
Bought a new monitor today so I can use my computer again. Yay! Still not much to report which is fantastic. Same pattern with my hands in the morning. The flexibility is still way down, and even though I stretch my fingers every day, I'm not seeing any improvement. Hips, knees, and back have also been getting the benefits of my 24 NSAID. I walked around a lot today which was really great. It felt good. I'm sore-ish now, but it was completely worth it.
I've found I want more and more to talk to other people with EDS. I feel I don't have many people who I can talk to who understand what it's like, but while I am part of a EDS message board, I don't often get to talk to people more than in posts with days-weeks in between. Not sure how to go about fixing this though.
We're in for another storm tonight through Wednesday. And snow until Sunday. UGH.
Time: 10:10 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 75º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 115º
Sunday, February 21, 2010
Monitor is kaputz.
Pain level: 4
Dislocations so far today: right index finger
Subluxations so far today: Right shoulder a few times, left shoulder once
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
Entries on here might be a little sporadic for a bit as my monitor just died and I am borrowing a very old, and very temperamental laptop.
Hands were just the tiniest bit more stiff this morning than yesterday, but still amazing in comparison.
Raynaud's is acting up more. Especially my right index and pinky finger. They almost always leave together. It's like they're traveling buddies. Come on back, dudes! I need you!
Time: 8:02 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 100º
Dislocations so far today: right index finger
Subluxations so far today: Right shoulder a few times, left shoulder once
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
Entries on here might be a little sporadic for a bit as my monitor just died and I am borrowing a very old, and very temperamental laptop.
Hands were just the tiniest bit more stiff this morning than yesterday, but still amazing in comparison.
Raynaud's is acting up more. Especially my right index and pinky finger. They almost always leave together. It's like they're traveling buddies. Come on back, dudes! I need you!
Time: 8:02 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 100º
Saturday, February 20, 2010
More snow in the forecast
Pain level: 4
Dislocations so far today: none! I'm on a pretty good role!
Subluxations so far today: Right shoulder several times
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
Not a whole lot to report. Woke up again being able to make a fist, which is awesome. My hands were a little stiffer this morning than yesterday, but I'm staying positive.
So far the medicine hasn't had any bad effects on my stomach (besides my normal tummy-ills), and I know I'm over-following the warnings. Drinking double the water they require and doubling the you-can't-lay-down time. I figure if I respect the meds, they'll respect me. I hope.
Next week looks like entirely snow. This does not please me. What the hell, weather.
Time: 8:19 PM
L
Can touch forearm? Just barely--was doing better during the day, but I think meds are wearing off right about now.
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 115º
Dislocations so far today: none! I'm on a pretty good role!
Subluxations so far today: Right shoulder several times
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
Not a whole lot to report. Woke up again being able to make a fist, which is awesome. My hands were a little stiffer this morning than yesterday, but I'm staying positive.
So far the medicine hasn't had any bad effects on my stomach (besides my normal tummy-ills), and I know I'm over-following the warnings. Drinking double the water they require and doubling the you-can't-lay-down time. I figure if I respect the meds, they'll respect me. I hope.
Next week looks like entirely snow. This does not please me. What the hell, weather.
Time: 8:19 PM
L
Can touch forearm? Just barely--was doing better during the day, but I think meds are wearing off right about now.
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 115º
Friday, February 19, 2010
[Deity of your choice] on a cracker!
Pain level: 5
Dislocations so far today: none yet
Subluxations so far today: Right shoulder several times
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
I woke up this morning with my right hand feeling as good as it does at 4PM! I couldn't believe it! I could make a fist the second I woke up, with no tightness in my skin/joints. My mobility is still far down from what I'm used to and I still have aching and pain, but nothing compared to what I've been living with. It's such a huge improvement to yesterday morning when I could barely make myself breakfast! These new NSAID's are a godsend so far. Let's hope they keep it up.
A lot to do today. I'll likely update this later on.
Time: 12:06 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 115º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 65º
Angle of extension of the last joint of finger: 110º
Dislocations so far today: none yet
Subluxations so far today: Right shoulder several times
Meds: meloxicam--1 tablet.
Major complaint: some stiffness, pain and swelling in the joints of my hand (R>L)
I woke up this morning with my right hand feeling as good as it does at 4PM! I couldn't believe it! I could make a fist the second I woke up, with no tightness in my skin/joints. My mobility is still far down from what I'm used to and I still have aching and pain, but nothing compared to what I've been living with. It's such a huge improvement to yesterday morning when I could barely make myself breakfast! These new NSAID's are a godsend so far. Let's hope they keep it up.
A lot to do today. I'll likely update this later on.
Time: 12:06 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 115º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 65º
Angle of extension of the last joint of finger: 110º
Thursday, February 18, 2010
The doctor merry-go-round
Pain level: 5
Dislocations so far today: none (yeah, baby!)
Subluxations so far today: Right shoulder, right ankle.
Meds: taking 1 meloxicam, so we'll see how that goes.
Major complaint: more stiffness, weakness, throbbing pain and swelling in the joints of my hand (R>L)
More doctors today. Saw the Dr. R, the Dermatologist. His visit sort of surprised me. He wanted me in a gown. (Um I'm here for my hands? Also, do you have any idea how hard it was to get dressed independently already? Now you want me to undress, wear paper, then dress myself again? With ONE semi-working hand? fine.)
He looked at my chart and immediately wanted to know all about my EDS. (um, also not why I'm here.) I gave him the run down and he had never heard of Hypermobility type EDS, which means that his information is older than 1997 when they restructured the classifications. I filled him in as much as I could, trying to steer him back to the problem at hand. No, I don't have the super stretchy skin type EDS. I don't have Classical. "Type I" that is. I have "Type III". Yes, I can touch my nose with my tongue. See? What I can't do, is make a fist with my right hand. Little help?
He looked really really closely at my fingers with a blue-ish light and what looked like welder's goggles and said that I have dilation of the capillaries (? some vein type thing that wasn't "veins") of my fingertips which does line up with a Dx of Scleroderma. But that isn't enough to make any sort of real diagnosis. He was un-intrigued by my calluses-that-aren't-calluses. His opinion is that they are either scleroderma, or they are calluses. Calluses that happen to hurt, and that I have no idea where they came from? Yup. He said that I must be doing something differently lately to form a callus there. well, okay. Like writing differently. Um, I'm not?
No tests ordered. Basically he told me I need to go see my Rheumotologist. Funny. He sent me here, remember? Dr R's advice was 1. Keep my hands warm for my Raynaud's (knew that). 2. Keep my hands moisturized so that the skin doesn't split from the tightness (can do). and 3. Here is this name of a doctor who is a Dermatologist AND a Rheumatologist--perhaps she's the next step (damn, that's a lot of schooling.)
So, I called Dr. E's office and he called me back and I filled him in on the above. He was disappointed by the lack of testing and answers as well. And his reaction to Dr. R saying it was just a callus I didn't remember getting was, "Well, it's not like you've started digging ditches in the past two weeks!" I knew I liked him for a reason. He told me to go ahead and make an appointment with this Rheumy/Derma Dr x2 woman. Which I did--earliest they can get me in is the end of April, but they'll call me if there is a cancellation.
Raynaud's has been going crazy today. I think it's a new record of something like 6-7 episodes. Bleck. And by 4PM I have "normal" (as in for other people but not for me with my EDS) movement in my right hand. Before then, it feels like I'm wearing a glove that is 5 sizes too small and any movement will rip it apart.
But now, we play the waiting game.
Time: 11:31 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 110º
Dislocations so far today: none (yeah, baby!)
Subluxations so far today: Right shoulder, right ankle.
Meds: taking 1 meloxicam, so we'll see how that goes.
Major complaint: more stiffness, weakness, throbbing pain and swelling in the joints of my hand (R>L)
More doctors today. Saw the Dr. R, the Dermatologist. His visit sort of surprised me. He wanted me in a gown. (Um I'm here for my hands? Also, do you have any idea how hard it was to get dressed independently already? Now you want me to undress, wear paper, then dress myself again? With ONE semi-working hand? fine.)
He looked at my chart and immediately wanted to know all about my EDS. (um, also not why I'm here.) I gave him the run down and he had never heard of Hypermobility type EDS, which means that his information is older than 1997 when they restructured the classifications. I filled him in as much as I could, trying to steer him back to the problem at hand. No, I don't have the super stretchy skin type EDS. I don't have Classical. "Type I" that is. I have "Type III". Yes, I can touch my nose with my tongue. See? What I can't do, is make a fist with my right hand. Little help?
He looked really really closely at my fingers with a blue-ish light and what looked like welder's goggles and said that I have dilation of the capillaries (? some vein type thing that wasn't "veins") of my fingertips which does line up with a Dx of Scleroderma. But that isn't enough to make any sort of real diagnosis. He was un-intrigued by my calluses-that-aren't-calluses. His opinion is that they are either scleroderma, or they are calluses. Calluses that happen to hurt, and that I have no idea where they came from? Yup. He said that I must be doing something differently lately to form a callus there. well, okay. Like writing differently. Um, I'm not?
No tests ordered. Basically he told me I need to go see my Rheumotologist. Funny. He sent me here, remember? Dr R's advice was 1. Keep my hands warm for my Raynaud's (knew that). 2. Keep my hands moisturized so that the skin doesn't split from the tightness (can do). and 3. Here is this name of a doctor who is a Dermatologist AND a Rheumatologist--perhaps she's the next step (damn, that's a lot of schooling.)
So, I called Dr. E's office and he called me back and I filled him in on the above. He was disappointed by the lack of testing and answers as well. And his reaction to Dr. R saying it was just a callus I didn't remember getting was, "Well, it's not like you've started digging ditches in the past two weeks!" I knew I liked him for a reason. He told me to go ahead and make an appointment with this Rheumy/Derma Dr x2 woman. Which I did--earliest they can get me in is the end of April, but they'll call me if there is a cancellation.
Raynaud's has been going crazy today. I think it's a new record of something like 6-7 episodes. Bleck. And by 4PM I have "normal" (as in for other people but not for me with my EDS) movement in my right hand. Before then, it feels like I'm wearing a glove that is 5 sizes too small and any movement will rip it apart.
But now, we play the waiting game.
Time: 11:31 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 110º
Wednesday, February 17, 2010
New Doc, new blood labs, and another new Doc.
Pain level: 5
Dislocations so far today: left wrist
Subluxations so far today: Right shoulder, right elbow
Meds: Naproxen, hardcore dose.
Major complaint: more stiffness, weakness, throbbing pain and swelling in the joints of my hand (R>L)
Overall, seeing the new doctor went over well today. This new Rheumologist (Dr. E) seemed nice. He listened and he didn't rush me out of his office like I was an annoyance. Took my symptom/family history and felt up the joints of my hands. Agreed they were swollen and mobility was severely limited for someone with EDS. He moved around the rest of my joints and didn't seem to find anything there.
When he was checking the mobility of my hips, he stretched them to about half their range. (Think while I'm laying down, he takes my ankle and with the knee of that leg bent, he moves my foot to be even with my opposite hip.) Dr. E said, "Huh. And of course because of your Ehlers Danlos, you're ridiculously flexible." I almost laughed because my right foot goes up to rest on my right shoulder. So I really didn't see what he did as "ridiculous" at all.
ANYWAY: After all that and looking back over my lab work, Dr E preambled by saying that there is always a chance that what has happened is that I've caught a virus, even one that never made me noticeably sick, and my immune system freaked out and is trying to fight it--and in doing so, has messed up and is attacking my joints instead. That kind of thing can happen and last from a few weeks to up to 6 months. And then it just goes away. So there is a chance that in 3 months, all these symptoms could be gone.
And then Dr. E says, "Now, with what I see, do I think that's the case with you? No."
Aw, hell. Okay fine.
The thing that concerned him was the calluses-that-aren't-calluses on my fingers. He says they look like I smoke (I don't) but feel not like they are supposed to. He sent me for more blood work (repeat ANA and more specific ANA tests) and is sending me to a dermatologist next for possibly a biopsy.
While he says we are still too early in testing to put anything in stone (ie. specific treatment)--right now we are looking into Scleroderma: an autoimmune disease that involves at best the thickening and tightening of the skin with joint pain, and at worst, the thickening of organ systems. Scleroderma is often preceded by 1-2 years of Raynaud's before any other symptoms show up. I'll have had Raynaud's for 1 year next month. But it might not be Scleroderma, so I'm trying not to worry.
Fun fact about possibility of Scleroderma: Having EDS (extra flexible and extra stretchy skin) would fuck up diagnostics of Scleroderma (stiffness, loss of mobility, skin tightness). And vice-versa. Funny stuff.
Seeing the dermatologist, Dr. R, tomorrow morning. Had my blood work done and boy do I have one helluva bruise. I'm a good bleeder, so normally I do pretty well in this area of diagnostics. Needle in, blood out, sure a bruise, but a small one. This time it was needle in, wiggle, wiggle, blood out, BRUISE!! Where they took from is all swollen, but so is the rest of that arm, so whatever.
Dr. E gave me a new NSAID that is supposed to last 24 hours, so it'll be in my system when I wake up and need it most. Trying to stay positive.
Time: 11:29 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 100º
Dislocations so far today: left wrist
Subluxations so far today: Right shoulder, right elbow
Meds: Naproxen, hardcore dose.
Major complaint: more stiffness, weakness, throbbing pain and swelling in the joints of my hand (R>L)
Overall, seeing the new doctor went over well today. This new Rheumologist (Dr. E) seemed nice. He listened and he didn't rush me out of his office like I was an annoyance. Took my symptom/family history and felt up the joints of my hands. Agreed they were swollen and mobility was severely limited for someone with EDS. He moved around the rest of my joints and didn't seem to find anything there.
When he was checking the mobility of my hips, he stretched them to about half their range. (Think while I'm laying down, he takes my ankle and with the knee of that leg bent, he moves my foot to be even with my opposite hip.) Dr. E said, "Huh. And of course because of your Ehlers Danlos, you're ridiculously flexible." I almost laughed because my right foot goes up to rest on my right shoulder. So I really didn't see what he did as "ridiculous" at all.
ANYWAY: After all that and looking back over my lab work, Dr E preambled by saying that there is always a chance that what has happened is that I've caught a virus, even one that never made me noticeably sick, and my immune system freaked out and is trying to fight it--and in doing so, has messed up and is attacking my joints instead. That kind of thing can happen and last from a few weeks to up to 6 months. And then it just goes away. So there is a chance that in 3 months, all these symptoms could be gone.
And then Dr. E says, "Now, with what I see, do I think that's the case with you? No."
Aw, hell. Okay fine.
The thing that concerned him was the calluses-that-aren't-calluses on my fingers. He says they look like I smoke (I don't) but feel not like they are supposed to. He sent me for more blood work (repeat ANA and more specific ANA tests) and is sending me to a dermatologist next for possibly a biopsy.
While he says we are still too early in testing to put anything in stone (ie. specific treatment)--right now we are looking into Scleroderma: an autoimmune disease that involves at best the thickening and tightening of the skin with joint pain, and at worst, the thickening of organ systems. Scleroderma is often preceded by 1-2 years of Raynaud's before any other symptoms show up. I'll have had Raynaud's for 1 year next month. But it might not be Scleroderma, so I'm trying not to worry.
Fun fact about possibility of Scleroderma: Having EDS (extra flexible and extra stretchy skin) would fuck up diagnostics of Scleroderma (stiffness, loss of mobility, skin tightness). And vice-versa. Funny stuff.
Seeing the dermatologist, Dr. R, tomorrow morning. Had my blood work done and boy do I have one helluva bruise. I'm a good bleeder, so normally I do pretty well in this area of diagnostics. Needle in, blood out, sure a bruise, but a small one. This time it was needle in, wiggle, wiggle, blood out, BRUISE!! Where they took from is all swollen, but so is the rest of that arm, so whatever.
Dr. E gave me a new NSAID that is supposed to last 24 hours, so it'll be in my system when I wake up and need it most. Trying to stay positive.
Time: 11:29 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 100º
Tuesday, February 16, 2010
Seeing the new specialist tomorrow
Pain level: 5/6
Dislocations so far today: left middle finger
Subluxations so far today: Right shoulder, left elbow, nearly my right hip
Meds: Naproxen, hardcore dose.
Major complaint: stiffness, weakness, throbbing pain and swelling in the joints of my hand--right worse than left by far. Lower back pain.
10 inches of snow tonight? Really? UGH. Seriously, people. No. More. Snow.
If my appointment tomorrow gets canceled after how long I've had to wait, heads will role.
That said, I am so nervous about seeing the Rheumatologist tomorrow. I've got all of these fears that I've been trying to ignore during the two month wait to see this guy, that have been building since then. I'm scared he'll be another doctor who thinks I'm full of shit and a complete hypochondriac. M keeps reminding me that I'm not seeing him for the EDS, but for my joint symptoms that can't be explained by EDS. And that I have abnormal test results that need to be sorted out so my complaint isn't based solely on symptoms and my word about my dislocations. I'm just nervous.
On the other hand, I'm scared he'll tell me I've got something more serious to worry about than my Ehlers Danlos. Lupus is always there in the back of my mind. And now with how bad my hands have been, Rheumatoid is too. So I keep seeing my mother's hands and how her wrists have fused on their own from the disease.
The swelling in my hands is about the same. My right hand looks much knobbier than my left and the fingers are visibly puffy. I've been having a hard time straightening my fingers all day. Sometimes the throbbing has 2-3 pulses of very severe pain that makes me flinch and guard that hand because it feels like someone is stabbing it--but it's all internal.
I've been getting some similar pain/throbbing in my right elbow and right knee, but not nearly as bad.
I've also been noticing that the pads of my fingers closest to my palm of my middle and ring finger on my right hand has been thickening, hardening, and turning yellow. Sort of like a callus, but I've done nothing to explain one being there. The same thing is on my left hand to a lesser extent. And it hurts! That's another reason I'm not sure it's a callus--the thing actually causes pain which makes no sense to me.
I guess we'll just have to see what the doctor says tomorrow.
Time: 8:19 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 105º
Dislocations so far today: left middle finger
Subluxations so far today: Right shoulder, left elbow, nearly my right hip
Meds: Naproxen, hardcore dose.
Major complaint: stiffness, weakness, throbbing pain and swelling in the joints of my hand--right worse than left by far. Lower back pain.
10 inches of snow tonight? Really? UGH. Seriously, people. No. More. Snow.
If my appointment tomorrow gets canceled after how long I've had to wait, heads will role.
That said, I am so nervous about seeing the Rheumatologist tomorrow. I've got all of these fears that I've been trying to ignore during the two month wait to see this guy, that have been building since then. I'm scared he'll be another doctor who thinks I'm full of shit and a complete hypochondriac. M keeps reminding me that I'm not seeing him for the EDS, but for my joint symptoms that can't be explained by EDS. And that I have abnormal test results that need to be sorted out so my complaint isn't based solely on symptoms and my word about my dislocations. I'm just nervous.
On the other hand, I'm scared he'll tell me I've got something more serious to worry about than my Ehlers Danlos. Lupus is always there in the back of my mind. And now with how bad my hands have been, Rheumatoid is too. So I keep seeing my mother's hands and how her wrists have fused on their own from the disease.
The swelling in my hands is about the same. My right hand looks much knobbier than my left and the fingers are visibly puffy. I've been having a hard time straightening my fingers all day. Sometimes the throbbing has 2-3 pulses of very severe pain that makes me flinch and guard that hand because it feels like someone is stabbing it--but it's all internal.
I've been getting some similar pain/throbbing in my right elbow and right knee, but not nearly as bad.
I've also been noticing that the pads of my fingers closest to my palm of my middle and ring finger on my right hand has been thickening, hardening, and turning yellow. Sort of like a callus, but I've done nothing to explain one being there. The same thing is on my left hand to a lesser extent. And it hurts! That's another reason I'm not sure it's a callus--the thing actually causes pain which makes no sense to me.
I guess we'll just have to see what the doctor says tomorrow.
Time: 8:19 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 105º
Monday, February 15, 2010
Swelling in joints is now constant
Pain level: 4
Dislocations so far today: none yet
Subluxations so far today: Right shoulder, left elbow
Meds: Naproxen, hardcore dose.
Major complaint: stiffness, weakness, throbbing pain and swelling in the joints of my hand--right worse than left by far.
Sorry I haven't been on here in a few days but my internet has been fuzzy to zilch. Woke up Saturday with bursitis starting in my right hip, but walking like a complete dunce for the day let me wake up Sunday with almost no bursitis pain in that leg. Woohoo!
My hands are another story. I've recently started waking up with visible swelling in both hands, with my right hand being much worse than the left. Same with mobility. I have a much larger range of motion in my left hand when I wake up than my right. I normally can't make a fist with my right for at least 2 hours after waking up. Up until a few days ago, the swelling would go down about halfway through the day. But now it doesn't go down. The joints in my hands (mostly right) are swollen 24 hours a day. Naproxen doesn't bring it down, but does help with the tenderness. The pain and stiffness does go down as the day goes on, but not the swelling. It's really freaking me out.
Wednesday can't get here fast enough.
EDIT: My mother (who has lived with Rheumatoid since she as 3 years old), when she heard about my weakness/stiffness getting worse, gave me a stress ball with homework to squeeze it during the day. Fittingly, it is apple-shaped.
Time: 12:36 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 90º
Dislocations so far today: none yet
Subluxations so far today: Right shoulder, left elbow
Meds: Naproxen, hardcore dose.
Major complaint: stiffness, weakness, throbbing pain and swelling in the joints of my hand--right worse than left by far.
Sorry I haven't been on here in a few days but my internet has been fuzzy to zilch. Woke up Saturday with bursitis starting in my right hip, but walking like a complete dunce for the day let me wake up Sunday with almost no bursitis pain in that leg. Woohoo!
My hands are another story. I've recently started waking up with visible swelling in both hands, with my right hand being much worse than the left. Same with mobility. I have a much larger range of motion in my left hand when I wake up than my right. I normally can't make a fist with my right for at least 2 hours after waking up. Up until a few days ago, the swelling would go down about halfway through the day. But now it doesn't go down. The joints in my hands (mostly right) are swollen 24 hours a day. Naproxen doesn't bring it down, but does help with the tenderness. The pain and stiffness does go down as the day goes on, but not the swelling. It's really freaking me out.
Wednesday can't get here fast enough.
EDIT: My mother (who has lived with Rheumatoid since she as 3 years old), when she heard about my weakness/stiffness getting worse, gave me a stress ball with homework to squeeze it during the day. Fittingly, it is apple-shaped.
Time: 12:36 PM
L
Can touch forearm? Just barely
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? Not even close--and OW it hurts to try!
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 90º
Friday, February 12, 2010
Great News!
Pain level: 4 in the morning/3/ 4 by now.
Dislocations so far today: left index finger
Subluxations so far today: right shoulder a few times, left elbow once, right wristonce twice--ow! while typing too.
Meds: Naproxen, hardcore dose.
Major complaint: stiffness and throbbing pain in my hands/wrists/elbows.
Awesome news today! We found out that the paperwork for my exemption from my health insurance cutting me off a year early went through and was approved! I can be covered under my mother's insurance until Feb. 2013 as a result of my disability--and at that time I can reapply if necessary. I hope to god, it's not necessary and that I can get something rolling in 3 years to be independent enough to have my own insurance. BUT, it's great news nonetheless. I no longer have to worry about if I go see the Rheumotologist and he says I need a battery of tests that will take 3 weeks, I'll have to say, "Nope. Sorry. Can't afford it." Now, I can take care of myself and that is such a relief.
Hands were really bad this morning. Right one much worse than the other. Normally, I have swelling in the joints that I can feel, but not really see. I can tell my hands don't sit right, and I'm not able to lace my fingers together comfortably. This morning the joints on my right hand were visibly swollen and very painful. I hate having such a hard time dressing myself in the morning. bleck.
Slept even worse last night. I want to take my amit. tonight so I can get some rest, but I have to be up early tomorrow for my mom's birthday breakfast. Maybe tomorrow night I'll get some good rest.
Hand stiffness using middle finger as a measure
Time: 6:55 PM
L
Can touch forearm?
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 115º
R
Can touch forearm?
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 90º
Dislocations so far today: left index finger
Subluxations so far today: right shoulder a few times, left elbow once, right wrist
Meds: Naproxen, hardcore dose.
Major complaint: stiffness and throbbing pain in my hands/wrists/elbows.
Awesome news today! We found out that the paperwork for my exemption from my health insurance cutting me off a year early went through and was approved! I can be covered under my mother's insurance until Feb. 2013 as a result of my disability--and at that time I can reapply if necessary. I hope to god, it's not necessary and that I can get something rolling in 3 years to be independent enough to have my own insurance. BUT, it's great news nonetheless. I no longer have to worry about if I go see the Rheumotologist and he says I need a battery of tests that will take 3 weeks, I'll have to say, "Nope. Sorry. Can't afford it." Now, I can take care of myself and that is such a relief.
Hands were really bad this morning. Right one much worse than the other. Normally, I have swelling in the joints that I can feel, but not really see. I can tell my hands don't sit right, and I'm not able to lace my fingers together comfortably. This morning the joints on my right hand were visibly swollen and very painful. I hate having such a hard time dressing myself in the morning. bleck.
Slept even worse last night. I want to take my amit. tonight so I can get some rest, but I have to be up early tomorrow for my mom's birthday breakfast. Maybe tomorrow night I'll get some good rest.
Hand stiffness using middle finger as a measure
Time: 6:55 PM
L
Can touch forearm?
Angle of extension of the center joint of finger: 80º
Angle of extension of the last joint of finger: 115º
R
Can touch forearm?
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 90º
Thursday, February 11, 2010
Just a dusting
Pain level: 4
Dislocations so far today: right shoulder once
Subluxations so far today: right shoulder a few times, rib on my left side, left elbow
Meds: Naproxen, hardcore dose, considering taking a 1/4 of my amit.
Major complaint: stiffness and throbbing pain in my hands/elbows.
"Blizzard" was a bust. We got a dusting that was gone by morning. Hey man, I'm super glad.
Not much to report. Still having unprovoked jaw pain on my right side, but whatever--it doesn't really interfere with anything. I'm sleeping like hell again and finding it harder and harder to adjust my position while I'm in bed trying to sleep. My hands get so stiff and immobile, but I usually really need them to move myself around. And laying in one position all night is NOT an option.
Good news, though! My meds (Naproxen & Aviane) came through the buy-in-bulk-prescription-place which is the only way my insurance will cover my meds that I take daily. So I got a 3 month supply in in time to cover me for a bit once my health insurance runs out. So hey--3 months extra before going to full price prescriptions isn't bad!
Still no call back from Social Security. Starting to think this is another one of their sorting policies like rejecting everyone straight out. If they appeal, maybe they're not full of shit. Maybe they're counting on the fakers to not call back and leave their contact info seventeen times hoping to get a return call to make an appointment. But I'll just keep calling. I understand the suspicion of medical professionals with so many people trying to take wrongful advantage of the systems in place--but it really makes the process slow and hellish for those of us who just need help.
Losing my health insurance in T-minus 17 days.
Hand stiffness using middle finger as a measure.
Dislocations so far today: right shoulder once
Subluxations so far today: right shoulder a few times, rib on my left side, left elbow
Meds: Naproxen, hardcore dose, considering taking a 1/4 of my amit.
Major complaint: stiffness and throbbing pain in my hands/elbows.
"Blizzard" was a bust. We got a dusting that was gone by morning. Hey man, I'm super glad.
Not much to report. Still having unprovoked jaw pain on my right side, but whatever--it doesn't really interfere with anything. I'm sleeping like hell again and finding it harder and harder to adjust my position while I'm in bed trying to sleep. My hands get so stiff and immobile, but I usually really need them to move myself around. And laying in one position all night is NOT an option.
Good news, though! My meds (Naproxen & Aviane) came through the buy-in-bulk-prescription-place which is the only way my insurance will cover my meds that I take daily. So I got a 3 month supply in in time to cover me for a bit once my health insurance runs out. So hey--3 months extra before going to full price prescriptions isn't bad!
Still no call back from Social Security. Starting to think this is another one of their sorting policies like rejecting everyone straight out. If they appeal, maybe they're not full of shit. Maybe they're counting on the fakers to not call back and leave their contact info seventeen times hoping to get a return call to make an appointment. But I'll just keep calling. I understand the suspicion of medical professionals with so many people trying to take wrongful advantage of the systems in place--but it really makes the process slow and hellish for those of us who just need help.
Losing my health insurance in T-minus 17 days.
Hand stiffness using middle finger as a measure.
Time: 8:41 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 140º (!!!)
R
Can touch forearm? No.
Angle of extension of center joint of finger: 90º
Angle of extension of last joint of finger: 115º
Wednesday, February 10, 2010
laid up by snow again
Pain level: 6/7
Dislocations so far today: left elbow once
Subluxations so far today: right shoulder a few times, right elbow once
Meds: Naproxen, hardcore dose
Major complaint: stiffness and throbbing pain in my hands, back pain.
Yesterday was stupid. I was definitely rocking a solid 8 on my pain scale and was barely out of bed all day. My joints are always destroyed by incoming low pressure systems. As soon as they show up for real, I'm much better. Another blizzard is in the process of delivering another 6ish inches of snow here and I'm in better shape already. Yesterday though--didn't even want to come on here to update. Hands and elbows were a wreck and throbbing. My spine felt as though it was being pulled backwards the whole day. Constant pulsing pain no matter how I moved/sat/lay down. Naproxen didn't help.
I was in a total pain-fog and could barely concentrate long enough to figure out what I wanted for breakfast. Just didn't care.
It was really depressing for a change. Sometimes when I wake up and I'm in terrible shape, I can manage a sense of humor about it and just get through the day. Yesterday I just felt horrible and I couldn't get my mood up.
I should have known it was going to be a bad day when I woke up before dawn and realized my blankets were caught underneath me. I was sleepy but cold, so I tugged on them. I was apparently pulling them towards my face because when they finally came free I poked myself in the eye--and the force/angle of it dislocated my finger. UGH. *laughing*
But so far today has been better. Still very sore and stiff. I can't stand up straight--I'm still hunched over from the back pain, but making a lot of progress.
Hope I'm even better tomorrow.
Hand stiffness using middle finger as a measure.
Dislocations so far today: left elbow once
Subluxations so far today: right shoulder a few times, right elbow once
Meds: Naproxen, hardcore dose
Major complaint: stiffness and throbbing pain in my hands, back pain.
Yesterday was stupid. I was definitely rocking a solid 8 on my pain scale and was barely out of bed all day. My joints are always destroyed by incoming low pressure systems. As soon as they show up for real, I'm much better. Another blizzard is in the process of delivering another 6ish inches of snow here and I'm in better shape already. Yesterday though--didn't even want to come on here to update. Hands and elbows were a wreck and throbbing. My spine felt as though it was being pulled backwards the whole day. Constant pulsing pain no matter how I moved/sat/lay down. Naproxen didn't help.
I was in a total pain-fog and could barely concentrate long enough to figure out what I wanted for breakfast. Just didn't care.
It was really depressing for a change. Sometimes when I wake up and I'm in terrible shape, I can manage a sense of humor about it and just get through the day. Yesterday I just felt horrible and I couldn't get my mood up.
I should have known it was going to be a bad day when I woke up before dawn and realized my blankets were caught underneath me. I was sleepy but cold, so I tugged on them. I was apparently pulling them towards my face because when they finally came free I poked myself in the eye--and the force/angle of it dislocated my finger. UGH. *laughing*
But so far today has been better. Still very sore and stiff. I can't stand up straight--I'm still hunched over from the back pain, but making a lot of progress.
Hope I'm even better tomorrow.
Hand stiffness using middle finger as a measure.
Time: 3:00 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: 80º
Angle of extension of last joint of finger: 110º
Monday, February 8, 2010
Feeling like a rag doll
Pain level: 5/6
Dislocations so far today: nothing yet, but a ton of near misses
Subluxations so far today: right shoulder a bunch of times, left elbow twice, right elbow once.
Meds: Naproxen, hardcore dose
Major complaint: stiffness and throbbing pain in my hands, joints feeling extra loose today.
I'm feeling really off today. The pain isn't that much worse than normal. It's not an easy day pain-wise, but by no means at a level that would explain how awful I feel.
But my joints feel like they are about to fall out of place constantly today. It feels like my bones are just rattling around in their sockets, held in with just one flimsy string. Snapping and cracking more than usual. But what's really giving me trouble is how many times today I'm almost dislocated my joints doing practically nothing. Almost dislocated my elbows several times today getting dressed. Nearly dislocated my hip twice today just moving around. I can feel the joints slipping and I have to quickly stop whatever the hell I'm doing to give the joint more stability fast before I end up with a dislocation and all the trauma/pain that comes with. It leaves me anxious to do anything, worried of what my body will do.
I guess the real problem today is fear. I'm scared because my joints feel so loose that my next move will make me fall even more apart. So it has me concentrating all the more on how I move and what I do. M says I'm being very "internal" today, and I guess she's right. I'm just trying to keep my limbs in place so I forget about the rest of the world. I really hate feeling this way: like my brain is putting all its energy into maintaining my condition--I prefer it when that's just a side hobby and living my life is my brain's main job. But today doesn't feel like that at all.
Hand stiffness using middle finger as a measure.
Dislocations so far today: nothing yet, but a ton of near misses
Subluxations so far today: right shoulder a bunch of times, left elbow twice, right elbow once.
Meds: Naproxen, hardcore dose
Major complaint: stiffness and throbbing pain in my hands, joints feeling extra loose today.
I'm feeling really off today. The pain isn't that much worse than normal. It's not an easy day pain-wise, but by no means at a level that would explain how awful I feel.
But my joints feel like they are about to fall out of place constantly today. It feels like my bones are just rattling around in their sockets, held in with just one flimsy string. Snapping and cracking more than usual. But what's really giving me trouble is how many times today I'm almost dislocated my joints doing practically nothing. Almost dislocated my elbows several times today getting dressed. Nearly dislocated my hip twice today just moving around. I can feel the joints slipping and I have to quickly stop whatever the hell I'm doing to give the joint more stability fast before I end up with a dislocation and all the trauma/pain that comes with. It leaves me anxious to do anything, worried of what my body will do.
I guess the real problem today is fear. I'm scared because my joints feel so loose that my next move will make me fall even more apart. So it has me concentrating all the more on how I move and what I do. M says I'm being very "internal" today, and I guess she's right. I'm just trying to keep my limbs in place so I forget about the rest of the world. I really hate feeling this way: like my brain is putting all its energy into maintaining my condition--I prefer it when that's just a side hobby and living my life is my brain's main job. But today doesn't feel like that at all.
Hand stiffness using middle finger as a measure.
Time: 7:05 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.
Angle of extension of center joint of finger: 80º
Angle of extension of last joint of finger: 105º
Sunday, February 7, 2010
I'd prefer to opt out of muscle spasms, thanks
Pain level: 4/5
Dislocations so far today: left index finger, right wrist
Subluxations so far today: right shoulder, left elbow
Meds: Naproxen, normal dose
Major complaint: stiffness and throbbing pain in my hands, spasms in my neck/shoulders & nerve pain.
Decided (likely stupidly) to forgo my daily hardcore dose of Naproxen because I woke up not feeling too terrible. Joints in my hands were stiff and achy but not as painful as usual and my first attempts at walking in the morning weren't laughable so--what the hell? Let's see how I do. And
I didn't do too bad, actually. Maintained all day and only took two Aleve when I had to do my PT exercises.
It's probably unrelated, but I'm getting some muscle spasms in my neck and shoulders on my left side. After particularly bad ones, I get that distinct burning nerve pain down my arm but it fades quickly. It comes back, but at least it goes away--something I wasn't saying 6 months ago. Trying to rest it. Maybe try heat later.
More lower back pain than normal (likely because of the no-meds-stunt) but it's pretty diffuse, though uncomfortable. Not much else of interest. Seeing the Rheumy in 10 days. The appointment can't get here soon enough.
Hand stiffness using middle finger as a measure.
Dislocations so far today: left index finger, right wrist
Subluxations so far today: right shoulder, left elbow
Meds: Naproxen, normal dose
Major complaint: stiffness and throbbing pain in my hands, spasms in my neck/shoulders & nerve pain.
Decided (likely stupidly) to forgo my daily hardcore dose of Naproxen because I woke up not feeling too terrible. Joints in my hands were stiff and achy but not as painful as usual and my first attempts at walking in the morning weren't laughable so--what the hell? Let's see how I do. And
I didn't do too bad, actually. Maintained all day and only took two Aleve when I had to do my PT exercises.
It's probably unrelated, but I'm getting some muscle spasms in my neck and shoulders on my left side. After particularly bad ones, I get that distinct burning nerve pain down my arm but it fades quickly. It comes back, but at least it goes away--something I wasn't saying 6 months ago. Trying to rest it. Maybe try heat later.
More lower back pain than normal (likely because of the no-meds-stunt) but it's pretty diffuse, though uncomfortable. Not much else of interest. Seeing the Rheumy in 10 days. The appointment can't get here soon enough.
Hand stiffness using middle finger as a measure.
Time: 11:02 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: 85º
Angle of extension of last joint of finger: 110º
Friday, February 5, 2010
I hate morning-hands.
Hand stiffness using middle finger as a measure.
Time: around 11:00 AM
L
Can touch forearm? wow- No.
Angle of extension of center joint of finger: 55º
Angle of extension of last joint of finger: 90º
R
Can touch forearm? *laughing* Not even close
Angle of extension of center joint of finger: 50º
Angle of extension of last joint of finger: 80º
I had to have M dial my phone for me this morning and I could barely hold it to my ear.
Happy birthday to me. *rolls eyes*
EDIT: 11:23PM
Pain level: 5
Dislocations so far today: Right index finger
Subluxations so far today: right shoulder a few times, my collarbone on my left side.
Meds: Naproxen, hardcore dose.
Major complaint: major stiffness and throbbing pain in my hand
Not much more to report besides the fact that my hands have been killing me all day. Sore, throbbing, swollen, weak. Fun times.
Hand stiffness using middle finger as a measure.
Time: around 11:28 PM
L
Can touch forearm? Yes.
Angle of extension of center joint of finger: 85º
Angle of extension of last joint of finger: 110º
R
Can touch forearm? No, about an inch away--YOWCH! very painful to attempt that right now.
Angle of extension of center joint of finger: 75º
Angle of extension of last joint of finger: 100º
Wednesday, February 3, 2010
Who knew I could update this thing before 10PM?
Some morning thoughts (not many)
Pain level: 5
Dislocations so far today: right shoulder while sleeping EDIT: and my right index finger twice and it's still not in right. :(
Subluxations so far today: left shoulder while sleeping
Meds: nothing yet- gotta go do that EDIT: meds obtained in the form of Naproxen, hardcore dose.
Major complaint: stiffness and throbbing pain in my hands
More walking around to do today and while I woke up feeling like I probably wouldn't be able to handle it, the stiffness is finally starting to work its way out and I'm off again for more errands today.
EDIT: Handled the walking around much better today. Less nerve pain, just the normal discomfort and instability. Having my birthday dinner with M & her fam tomorrow at the restaurant that mixes my favorite drink so I may or may not post on here depending on the level of my inebriation.
Hand stiffness using middle finger as a measure.
Pain level: 5
Dislocations so far today: right shoulder while sleeping EDIT: and my right index finger twice and it's still not in right. :(
Subluxations so far today: left shoulder while sleeping
Meds: nothing yet- gotta go do that EDIT: meds obtained in the form of Naproxen, hardcore dose.
Major complaint: stiffness and throbbing pain in my hands
More walking around to do today and while I woke up feeling like I probably wouldn't be able to handle it, the stiffness is finally starting to work its way out and I'm off again for more errands today.
EDIT: Handled the walking around much better today. Less nerve pain, just the normal discomfort and instability. Having my birthday dinner with M & her fam tomorrow at the restaurant that mixes my favorite drink so I may or may not post on here depending on the level of my inebriation.
Hand stiffness using middle finger as a measure.
Time: 11:00 AM
L
Can touch forearm? Yes. Just barely
Angle of extension of center joint of finger: 90º
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: 90º
EDIT: and for comparison
Time: 10:49 PM
L
Can touch forearm? Yes. Just barely
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: 90º
Angle of extension of last joint of finger: 110º
Tuesday, February 2, 2010
way too much mall
Pain level: 5/7 depending on when you ask
Dislocations so far today: left shoulder, left index finger.
Subluxations so far today: right ankle once, right shoulder a few times.
Meds: Naproxen, hardcore dose
Major complaint: stiffness and pain in my hands, nerve pain down my left leg with too much walking
Went back to the mall today, this time with M, to order prints of our professional wedding shots at a nicer-than-CVS 1 hour photo place. We were told it would take about an hour and a half (lot of images) so we wandered around. Well, it seems our big gay wedding pics killed their photo printing machine because when we went back, we were told it was going to take another hour. We went back--nope--it's gonna take just one more hour. UGH. Got our prints finally and we're putting them in albums.
Started out on the cane walking around, but I started getting bad nerve pain down my left leg so I switched to the chair. Made life much easier except for how much my hands were hurting already. Can't win them all, I guess.
Other than that, not much else to report. Left leg is killing me but I'm just riding it out as I'm really not in the mood to be a drugged out zombie.
Funny Mall Happening:
I was using the mall restroom (always fun in a chair) and when I went to wash my hands I discovered two things.
The option I chose involved me saying, "Oh great. This makes my life super easy." And grabbed onto the edge of the sink using that to swing/shove my chair over to another sink. Tah dah. Clean hands, clean wheels.
Oh, and I slept like hell again. They better finish construction soon.
Hand stiffness using middle finger as a measure.
Dislocations so far today: left shoulder, left index finger.
Subluxations so far today: right ankle once, right shoulder a few times.
Meds: Naproxen, hardcore dose
Major complaint: stiffness and pain in my hands, nerve pain down my left leg with too much walking
Went back to the mall today, this time with M, to order prints of our professional wedding shots at a nicer-than-CVS 1 hour photo place. We were told it would take about an hour and a half (lot of images) so we wandered around. Well, it seems our big gay wedding pics killed their photo printing machine because when we went back, we were told it was going to take another hour. We went back--nope--it's gonna take just one more hour. UGH. Got our prints finally and we're putting them in albums.
Started out on the cane walking around, but I started getting bad nerve pain down my left leg so I switched to the chair. Made life much easier except for how much my hands were hurting already. Can't win them all, I guess.
Other than that, not much else to report. Left leg is killing me but I'm just riding it out as I'm really not in the mood to be a drugged out zombie.
Funny Mall Happening:
I was using the mall restroom (always fun in a chair) and when I went to wash my hands I discovered two things.
- The lower "handicap" sink was about level with my knees so there was no chance in hell I'd be able to use that one.
- Absolutely zero water would come out of the faucet of the normal (read: way too tall for me) sink I had chosen to use.
The option I chose involved me saying, "Oh great. This makes my life super easy." And grabbed onto the edge of the sink using that to swing/shove my chair over to another sink. Tah dah. Clean hands, clean wheels.
Oh, and I slept like hell again. They better finish construction soon.
Hand stiffness using middle finger as a measure.
Time: 9:12 PM
L
Can touch forearm? Yes. Just barely
Angle of extension of center joint of finger: 80º
Angle of extension of last joint of finger: 110º
R
Can touch forearm? No.
Angle of extension of center joint of finger: 70º
Angle of extension of last joint of finger: 105º
Monday, February 1, 2010
Not much of interest
Which is nice.
Pain level: 5
Dislocations so far today: right shoulder once, left wrist once.
Subluxations so far today: right shoulder a few times, right thumb.
Meds: 2 Aleve (forgot to take my Naproxen)
Major complaint: stiffness and pain in my hands
Not a whole lot to say here. Hands were killing me again today. More so than usual (warm, swollen, achy) which worried me until M asked if I had taken my Naproxen today. Uhhh. Nope. Oops. But that at least explains it. It was too late in the day to bother taking my prescription stuff which usually takes about 5 hours to kick in anyway.
Slept like hell, but that might have something to do with the construction workers building a house outside my window and starting work before the sun comes up. >.O
Hand stiffness using middle finger as a measure.
Pain level: 5
Dislocations so far today: right shoulder once, left wrist once.
Subluxations so far today: right shoulder a few times, right thumb.
Meds: 2 Aleve (forgot to take my Naproxen)
Major complaint: stiffness and pain in my hands
Not a whole lot to say here. Hands were killing me again today. More so than usual (warm, swollen, achy) which worried me until M asked if I had taken my Naproxen today. Uhhh. Nope. Oops. But that at least explains it. It was too late in the day to bother taking my prescription stuff which usually takes about 5 hours to kick in anyway.
Slept like hell, but that might have something to do with the construction workers building a house outside my window and starting work before the sun comes up. >.O
Hand stiffness using middle finger as a measure.
Time: 10:52 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: 80º
Angle of extension of last joint of finger: 100º
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