Three days until Tufts

Pain level: 6
Dislocations so far today: left wrist
Subluxations so far today: Right shoulder a couple of times, left index finger

Meds: Ketoprofen-- 1 twice a day. 

Major complaint:  more stiffness/pain/swelling/itching/tingling in my fingers, hand, and wrist (R MUCH >L)

My hands have really run the gambit since my last post.   Right after my last entry, my right hand ballooned up even more than before and the swelling wouldn't go down.   I was miserable.  It hurt so bad and was going from red to purple to blue all day.  I called Dr. E and let him know what was going on.  He told me to hang in there until my appointment in Boston since he didn't see how useful it would be to start a new treatment so close to my appointment.  It's what I expected, but I did want to let him know.  He also agreed to fax over his notes and my blood results to Dr. G in Boston.  

Then, Saturday my hands were suddenly doing better.  The swelling was down (not to Pre-Oct levels but much better than the day before) and the coloring was normal.  Whoohoo!  We've been trying to figure out what it is that I did right to cause this but the only things that I did that were different from my routine were to have a panic attack (not something I'd like to do often) and eat fast food for the first time in months (I think we can rule this out as having a positive influence just by basic instinct.) 

The only odd thing was around that time I noticed that I have a lump on the center joint of my right middle finger.  It's off to one side and soft but firm to the touch.  It was smaller at first and by now is maybe the size of a split pea.  It's not necessarily painful compared to my joints--it's more uncomfortable than anything.  

I've also been having some random coughing fits that leave my voice hoarse and my chest feeling tight  like I can't take a deep breath for 10-15 minutes.

My lip swelled up again, but I had bitten it at breakfast and at dinner it started to swell.  I assume I just wailed on it good and the swelling was delayed.  I probably bit it again at dinner and my mouth was like, "That's it!  That's the last straw!"  *SWELL*

Starting today my hand has gone back to its "normal" swollen, stiff, red self.  My fingernails turned a nasty shade of blue after dinner so I ran them under warm/hot water for a minute or so but that just seemed to make things worse.  I started getting prickling pain and stinging/tingling in my fingers and the hand started to swell more.  It turned bright red with big splotches of bright blue on both sides of my hand.  And I couldn't move my fingers at all for over a minute after taking it out of the water.  Yuck.

Social Security hasn't called me back yet.  I just mailed them out more paperwork even though I really wanted to talk to them before mailing things so I could be sure exactly what they wanted, but they have set a deadline for the things they need and I don't want to risk missing it waiting for their call.  So we'll see how that goes.

No more fever spikes though, I think.  I have been overheating at night, but I'm not in a mood to get out of bed to go take my temp at 4AM.  No thanks.
 
Hand stiffness using middle finger has measure

Time: 11:24 PM

L

Can touch forearm? over an inch off

Angle of extension of the center joint of finger: 35º

Angle of extension of the last joint of finger: 100º OW!

R

Can touch forearm? Not even funny how much this isn't a possibility

Angle of extension of the center joint of finger: 20º

Angle of extension of the last joint of finger: 75º

Fee-vah!

Pain level: 5
Dislocations so far today: right thumb 
Subluxations so far today: Right shoulder a couple of times, right elbow once

Meds: Ketoprofen-- 1 twice a day.  And a couple of Tylenol 

Major complaint:  more stiffness/pain/swelling/itching/tingling in my fingers, hand, and wrist (R MUCH >L)
Temperature:  99.8ºF

For the second night in a row I've been feeling really warm and flushed and dizzy.  I took my temp. last night and it was 99.6ºF.  Tonight I started feeling it again and my mother agreed my face was really hot to the touch so I took it again and it was 99.8ºF.  Now, that's not super-high.  Hell, I'm not even sure it is technically high enough to count as a fever.  Even a low-grade one.  But it feels like one.  I feel a little dizzy and I'm having difficulty concentrating because all I want to do is lay down.  

My eyes feel like they are burning up even after some Visine drops. 

My right hand has been a joke today.  Purple and blue colored, swollen, and painful.  I haven't been able to make a fist yet, although being able to touch my fingertips to my palm around 7:30PM was nice.  It's ridiculous.  I'm calling Dr. E tomorrow to make sure that he has faxed/sent over all the info the specialist in Boston will need, and to make sure he knows what is going on with this hand of mine.  

Scary moment of the day:  My right index finger was bright white from Raynaud's while sitting at the dinner table.  The rest of the hand was blue.  M suggested I run it under hot water, so I did.  I couldn't really feel the water all that much so I kept checking the temperature with my other hand.  And then all of a sudden it was like a thunderclap of nerves.  Like every nerve in my hand switched on and started screaming at me.  It was like when you sit on your foot for over an hour, and when the feeling starts to come back it hurts--it hurts like mad and you can't put weight on it?  That weird tingling, burning, stinging pain?  My hand felt like that but worse.  I couldn't move my fingers for a good minute after the pain faded. Like the muscles weren't even there.  Then it was gone and back to "normal."  Still swollen but at least a healthy pink color.  I vote we not do that again, okay Hand?

Hand stiffness using middle finger has measure

Time: 9:27 PM

L

Can touch forearm? over an inch off

Angle of extension of the center joint of finger: 35º

Angle of extension of the last joint of finger: 100º OW!

R

Can touch forearm? Not even funny how much this isn't a possibility

Angle of extension of the center joint of finger: 20º

Angle of extension of the last joint of finger: 60º

I carry a cane

"I carry a cane 'cause I tried to change and I tried too hard so I hurt my leg and well, overall, I just stayed the same.  Now I carry a cane."  --Mother Mother

Pain level: 6
Dislocations so far today: left elbow

Subluxations so far today: Right shoulder a couple of times, left index finger three times

Meds: Ketoprofen-- 1 twice a day. Unless I get sick and puke it up.

Major complaint:  more stiffness/pain/swelling/itching/tingling in my fingers, hand, and wrist (R MUCH >L)

It hasn't been an easy day.  I haven't really felt like going into it, but I've started seeing a counselor to help me cope with everything that is going on.  She is kind and crunchy and a little astounded by the extent of the situation I'm in.    

I saw her again today and, while she acknowledges that there isn't much to be done until we know for sure what is causing these problems, she wants me to do three things.  

--She wants me to remind myself not to feel guilty about my situation right now.  I can't work and M is supporting me.  M takes me everywhere, calms me down when I panic, helps me dress, etc.  I feel bad about this, like I'm making everyone's life harder.  But I need to remember that this is not my fault.  This is not something that is happening because I am not working hard at fixing it or because I am doing something wrong.  There is nothing I could have done to prevent this and there is nothing I am not doing that I should be doing.  I am doing everything I can.   We didn't sign on for this, but this is what we have and it isn't anyone's fault.

--She wants me to cry more.  Which I think is ridiculous because I feel like all I do is cry.  When I'm not in a public/friend setting I'm a pro at being a blubbering mess.  But because I don't want to be thinking about it, when I do think about everything that is going on I start to lock it down.  I'm angry (like really pissed off) and scared (yup, a lot of that too) and she's concerned I'm not letting that out enough.  That it's just sitting around in my head waiting like the rest of me for news.  She says that being strong for everyone else and trying to get on like there is nothing the matter is just another burden I'm heaping on the rest.  I'm not sure what to do about this one.  I'm sick of crying.  I don't feel like it helps anymore.

--She wants me to be more upfront with my friends.  I have been feeling sort of isolated recently because I feel like no one really understands what is going on with me.  I have been told all my life by doctors and family that talking to anyone about my health problems was just looking for attention.  That my health problems were all in my head and I was just making them up to get the attention.  After 13 years of that even though doctors now confirm that I have serious conditions, when I feel like I really need to talk to someone about these legitimate problems, I suddenly feel like I can't because they can't possibly want to hear about it and will think I am just looking for pity.  Well, sure.  I feel like I need some attention, because--as M put it--attention is the opposite of being ignored.  It's not that I'm doing this FOR the attention, I just feel like shit and like I can't do this alone.  

M says that I have presented my situation to our friends for so long as being a person who doesn't want pity and will only talk about my health-shit in a joking matter and so no one thinks that I want someone to come up to me and ask, "Hey, how are you holding up?  Exactly what is going on?"  But I do.  I feel like if they ask and I do anything besides joke that I'm pretty shitty, if I break down, that my friends would regret talking to me about it.  I feel like I've got so much right now and even though our friends are expressing concern to M, I rarely hear it.  And that makes me feel very alone.

But I feel like a complete asshole freaking out so much right now because we don't even know what it is I have!  There's a slim chance that this is just an atypical presentation of Rheumatoid Arthritis and then sure I'll still be pissed and scared about what the future will bring, but that would rank pretty low on the HOSHIT Meter of answers I could get.  (Which is pretty sad on it's own.)  But then I'd feel like a total fool for panicking so much and for worrying my friends for "nothing."  But while Lupus and Scleroderma are still the main suspects, I can't help but freak the hell out.  


Anyway.  Got a letter in from Social Security today.  Apparently on the documentation of the closed accounts, my mom's bank wrote the wrong number for the bank account number that I was taken off of, which would explain why Social Security is still under the impression that my name is still currently said bank account and why they are confused as to this documentation that my name has been taken of a bank account that I did not mention to them and that I have never even been on in the first place.  Why can't everyone just get their shit together?  I'm doing my part--what the hell, people?

Also squirrels dug up my bonsai out of their pots today.  They dug up all but the one I'm pretty sure didn't survive the winter.  I put them back as best I could and I guess we'll just have to wait and see if they survive.  I know they are just trees but this really upsets me.  What the hell, nature?

My right hand was a mess today.  I couldn't use it until 7PM.  It was hurting more than usual and was bending even less than normal. 

10 more days. 

Hand stiffness using middle finger has measure

Time: 8:38 PM

L

Can touch forearm? Holy crap! Yes! just barely

Angle of extension of the center joint of finger: 40º

Angle of extension of the last joint of finger: 110º OW!

R

Can touch forearm? Not even funny how much this isn't a possibility

Angle of extension of the center joint of finger: 25º

Angle of extension of the last joint of finger: 70º

My hand is patriotic.

Pain level: 6
Dislocations so far today: none so far

Subluxations so far today: Right shoulder a couple of times, right elbow once

Meds: Ketoprofen-- 1 twice a day. 

Major complaint:  more stiffness/pain/swelling/itching/tingling in my fingers, hand, and wrist (R MUCH >L)


I gambled and won on Friday by having just enough drinks to be able to mute the pain enough to do a little bit of dancing at a friend's birthday party, but I didn't get drunk enough to forget my limits and then wake up the next day wanting to kill myself for overdoing it.  I woke up Saturday feeling sore but not terribly so, which was awesome.  Booze as painkillers normally backfires on me pretty badly.


My right hand has been on again off again.  Mostly it's just been getting worse.  I get a couple hours out of the day when I feel like I can use the hand like normal, but mostly I'm either dropping things that I think I can hold but can't or I can't use the hand at all.  My fine motor skills with that hand are shot.  Small distances are messing me up when I try to put things down where I want them and stuff like that.  It's probably just the swelling, but it seems like I can't feel as well with my right hand as with my left.  Like if I run my left index finger over my sweatshirt I get one feeling, and if I use my right index finger I get mostly the same thing except muted, less detail.  It's all going on the list to tell the doctor on the 29th.


Balloon Hand returned today.  Along with a minor appearance of Balloon Lip.  I'm hoping the mouth swelling is just to do with the fact that they found water that they missed in the basement from the flooding and my system has freakouts from mold.  The lip is so far not as bad as last time. Took a Claratin, so we'll see.  Balloon hand is really stupid though.  I tried to force it to bend earlier and I felt that same stinging I got when my thumb split so I cut that shit out right away.  It's starting to get a little better by now.  


When I went outside to see my mom my right hand turned blue.  Like crayon blue.  I don't like it.  I rubbed my fingers and they turned immediately bright white and then eventually went back to normal after a brief stint of bright red and burning.  I feel so American.  But I mean really, I could just buy a flag, so no need to ever do that again, okay?

Hand stiffness using middle finger has measure

Time: 4:31 PM

L

Can touch forearm? no, about 2 inches off

Angle of extension of the center joint of finger: 30º

Angle of extension of the last joint of finger: 90º OW!

R

Can touch forearm? Not even funny how much this isn't a possibility

Angle of extension of the center joint of finger: 20º

Angle of extension of the last joint of finger: 60º

I really am trying to get used to those numbers, but it just feels so weird to have so little movement in my hands.

 

Hey, Hand--this blog is supposed to be about EDS.

Pain level: 5 
Dislocations so far today: left elbow

Subluxations so far today: Right shoulder a couple of times, left elbow once, right wrist once, and I subluxed my left hip from sneezing just now.  OW!

Meds: Ketoprofen-- 1 twice a day. 

Major complaint:  more stiffness/pain/swelling/itching/tingling in my fingers, hand, and wrist (R MUCH >L)

Okay, for real, Hand, this was not how things were supposed to go.  This was not really supposed to be about you--okay so maybe a little when your fingers dislocated, but you know what I mean.  I started this blog thing to keep track of my Ehlers Danlos crap, of which there is plenty.  I know how to deal with the EDS.  I've got that shit nearly down-pat.  Not that it is easy, but I understand it.  As in: Oops--my patella dislocated.  Okay, just make sure the leg is straight and push it down from the thigh and back into place until you get a good popcrunch.  Tah dah!  Now ice it and rest it until the boredom overcomes the pain. 

The plan was to keep track of things like that, so I could maybe find a pattern in my activities or medicines to improve my quality of life.  Sounds like a good plan, right?

The plan was not to deal with stuff that I have no idea why it's happening or what it is or how to make it stop.  Stuff that I'm pretty sure has nothing to do with the EDS.  I did that when doctors (and mostly me) were trying to figure out what my EDS symptoms  meant.  And it sucked.  But now that's over, and I'd like to keep the Hoshit, what's wrong, now! fiascoes in the past.  That isn't your plan though, Hand.

Like yesterday.  Right Hand, you were a little more puffy than normal and I was having a hard time all day convincing you that making a fist could be fun.  Especially the thumb, which stung really badly along the finger pad when I tried to force it to bend.  The skin split right down the thumbprint.  Great.  Guess, I need to learn not to be so forceful with you, huh Hand?    

And then last night, Hand, when you just suddenly started inflating like a balloon.  Turned reddish purple.  The skin starting stinging and tingling and burning and just all out hurting like hell.  I couldn't make a fist OR uncurl the fingers to straighten them out.  Out of no where.  

You felt better, Hand, when M got me an ice-pack for you to wear as a hat.  It didn't make the swelling go down, but at least I couldn't feel the stinging anymore.  It let me fall asleep and this morning you were back to "normal" puffiness like nothing had ever happened.  o.O

Hand, I would appreciate it if you wouldn't mind stopping with all this autoimmune crap so I could get back to writing about some good ol' fashioned dislocations.  Because those problems you just put back in joint, rest it, maybe ice it.  There's a course of action.  Not just wondering, what the hell?  And sometimes that is just plain worse than how much more dislocations/subluxations can hurt.   

Thanks for listening, Hand (And typing this out?  Weird.)

Your Friend,

The rest of me, with emphasis on the Brains part. 

Hand stiffness using middle finger has measure

Time: 2:29 PM

L

Can touch forearm? no, about 2 inches off

Angle of extension of the center joint of finger: 30º

Angle of extension of the last joint of finger: 90º OW!

R

Can touch forearm? Not even funny how much this isn't a possibility

Angle of extension of the center joint of finger: 20º

Angle of extension of the last joint of finger: 60º

I really am trying to get used to those numbers, but it just feels so weird to have so little movement in my hands.

Allergic? Yes? To the meds? No?

After a solid 10 hours of coma-esque sleep thanks to Benadyl, my lip was still swollen, but much less so--and it was no longer painful.  And so the experiment began.

I took a day off from my Ketoprofen yesterday to see if going back on it again today would trigger another inflated-lip episode.  I was super anxious that going off the Ketoprofen would make my hands swell up to the size of regulation footballs, but nope.  No extra swelling or drastically reduced range of motion than when I'm on the Ketoprofen.  It even took the same amount of time to make a fist in the morning.  I had a bunch more pain, sure, but the swelling in my hands didn't go up.  The swollen lip remained mostly the same all day.

Today, I woke up with my lip only slightly swollen.  Just barely different from the other side.  I started taking the Ketoprofen again--my normal twice a day dose--and no lip swelling.  And the pain is way down.  Pretty cool.

I'm no expert, but I take this to mean:

1.  I am likely not allergic to the Ketoprofen and the swelling
     a.  was/is due to pollen *keeping fingers crossed for this one* OR
     b.  is a new region swelling up like my hands.  (boo, I vote no on this     option)
2.  The Ketoprofen definitely reduces the joint pain in my hands
     a.  I was miserable without it, flinching and guarding my hands all the     time
3.  The Ketoprofen doesn't do much for the swelling or my hand mobility.  I feel I can have two reactions to this.
     a.  Oh shit.  *insert crazed stress-filled rant here*  OR
     b.  Oh-kay.  So keep up with your hand stretches and be happy the meds work for the pain.  You don't really NEED to be able to touch your fingers to your forearm, do you?
4.  I vote for the second reaction.  Here goes.

Hand stiffness using middle finger has measure

Time: 10:22 PM

L

Can touch forearm? no, about an inch off

Angle of extension of the center joint of finger: 50º

Angle of extension of the last joint of finger: 120º

R

Can touch forearm? 4 inches off. Yowch!

Angle of extension of the center joint of finger: 35º

Angle of extension of the last joint of finger: 100º

Histamines? Why you gotta be this way?

A few hours after dinner (and my second dose of Ketoprofen for the day) the minimal swelling on the right side of my upper lip has ballooned up.  Balloon hand.  Balloon lip.  Dinner was nothing exotic and it's not like I just started taking the Ketoprofen, so I have no idea where this is coming from.  Maybe it's just a repeat of my random allergic reactions from when I was 12-ish?

I look like I got into a bar fight and have been punched in the mouth.  But in a very dignified way.  That is until I hold up my bright orange washcloth full of ice to my mouth and make the I am uncomfortable and slightly grumpy eyes.  Then I just look I got into a bar fight.

The swelling just kept getting worse so I took some Benadryl (in case you can't tell) and I'm waiting for that to kick in.  We're really hoping this is not me suddenly becoming allergic to the Ketoprofen since it seems to be working and not destroying my digestive tract.  I have been advised by the mom-in-law to take the weekend off from Ketoprofen, see how that goes, and talk to my doctor next week.

But until then, I plan to sleep the sleep of the Benadryl.  G'night, all!

Stiff upper lip

Pain level: 6

Dislocations so far today: left index finger

Subluxations so far today: Right shoulder a couple of times, left elbow once, right scapula once

Meds: Ketoprofen-- 1 twice a day. 

Major complaint:  stiffness/pain/swelling in my fingers, hand, and wrist (R>L), back pain.

My upper lip is swollen.  Only on the right side.  What the hell?  It was fine when I woke up, it was fine during and after breakfast (same breakfast I've had all week so no weird foods), but maybe 2 hours after eating, it started feeling puffy and tingly.  Like how my mouth used to feel when I'd have cause-never-identified-allergic reactions when I was 12-ish and my lips would swell up.  But no, this was just my upper lip and just the right part of it.  And really, it's less the lip and more the section of skin above my lip but below my nose.  If I press on it with my fingers it's definitely bigger and maybe a little lumpy?  I think it's gone down a bit since it first cropped up this afternoon, but it's still swollen.  I have no idea what this means other than my right side doesn't like me anymore.

So far so good with the Ketoprofen, though.  I'm still waking up with Balloon Hand on the right side, but about 30 minutes to 1 hour after taking the Ketoprofen, as long as I do some stretches, I have nearly full mobility of my right hand.  Pretty cool.  

I have figured out an exercise that works for me to get the hand moving again.  Just pressing down on the knuckle joints or pulling my fingers back hurts way too much to keep up with in the morning.  Instead what works is for me to make as much of a fist as I can and smack it with increasing strength into my left palm.  Lightly at first, and upping the force as soon as the pain levels out.  Eventually this lets me make a full fist.  The only down side is that it looks like I'm making a fist and practicing punching into my other hand.  M says I look like I'm getting ready to take somebody down.  Yup, that's me.  Always ready to brawl.  Same thing with stretching my fingers backward--I straighten them out as far as they can go and start tapping them against my other hand until I get some movement back.  

I still can't get used to feeling of damn, I am SO not bendy in my hands.  It's really strange for me after all these years of being so loose in the ligaments.  

Hand stiffness using middle finger has measure

Time: 11:04 PM

L

Can touch forearm? Just barely

Angle of extension of the center joint of finger: 55º

Angle of extension of the last joint of finger: 120º

R

Can touch forearm? Not a chance.  Yowch!

Angle of extension of the center joint of finger: 35º

Angle of extension of the last joint of finger: 100º

Easter update

Pain level: 5

Dislocations so far today: right ankle once

Subluxations so far today: Right shoulder a couple of times, left elbow once

Meds: Ketoprofen-- 1 twice a day. 

Major complaint:  stiffness/pain/swelling in my fingers, hand, and wrist (R>L)

First off--Happy Easter to all those who celebrate!  We had a nice breakfast with my fam' this morning and a lovely dinner with M's family.  It was really nice day, despite our "spring" manifesting in 80º weather.  So sue me for liking 60º days. 

I am happy to report that I am doing much much better on this new medicine.  The side effects are practically nil so far, and the swelling in my hands has gone down.  It's not at all like when I started taking the Meloxicam and my hands went immediately back down to almost normal--like how they used to be before they started acting up like this.  That was awesome, though.  

The Ketoprofen doesn't bring the swelling down to that, but it brings the swelling and pain down enough that I can use my right hand.  It's still all puffy, but about half the size it is without the meds.  And at this point without the medicine, my right hand is significantly worse off than it was at its worst when I was on the Meloxicam, so I think this new puffy-but-usable will likely become my new goal for "normal."  

My only problem so far with the Ketoprofen is that it's a 6-8 hour med, so I'm not covered the whole day.  If I take it at dinner as instructed, it's nearly out of my system around the time I go to sleep--so when I wake up in the morning, my hands are a friggin' mess.  It's especially bad if I wake up earlier than usual, like today.   My right hand was swollen, nearly immobile, mad-painful, discolored, and very cold to the touch.  About a half and hour after I take the Ketoprofen with breakfast, the swelling starts to come down and I get movement back in the hand.  Don't get me wrong, it's a really awesome transformation to watch and feel.  I'd just sort of like to use my right hand all the time.

But it is amazing how much difference not being on the Etodolac (i.e. not feeling as though I have constant food poisoning) can have on a person.  I just feel better as a whole.  Spirits are currently up and I like them that way.

And since I'm in a better place and I have some cheer leftover today, I'm sending out springtime love and gentle hugs to all who need them.  I hope they arrive promptly.

Hand stiffness using middle finger has measure

Time: 10:04 PM

L

Can touch forearm? Just barely

Angle of extension of the center joint of finger: 50º

Angle of extension of the last joint of finger: 120º

R

Can touch forearm? Not a chance.  Yowch!

Angle of extension of the center joint of finger: 40º

Angle of extension of the last joint of finger: 100º