I've hit a new low

I forgot to mention in my last post what happened when I went to the pharmacy to pick up my Ketoprofen.

I walked up to the Pick Up counter and before I could say anything, the pharmacist walked away from me.  I figured, huh, he must be busy.  Well, he comes back with an order and looks at me and says, "InsertMyLastName, right?" and starts to ring me up for the Ketoprofen.

He recognized me.  AND he pronounced my last name, which is long and Polish and involves c's and z's, correctly!  This is bad news.

Thank the gods, it's also hilarious. 

PS:  Balloon Hand showed up again this morning.  Feeling better by around 5PM.  And M brought me to the store to buy muffins since I have to eat bigger breakfasts to take my meds.  And muffins make any day better.

Etodolac: The rebound boyfriend?

Pain level: 5

Dislocations so far today: left elbow

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

Meds: Ketoprofen-- 1 twice a day.  1/4 of an amitriptyline.

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

I got off the Meloxicam because it just stopped doing it for me.  Dr. E then pointed me in the direction of Etodolac.  And like I was on the rebound from a stale relationship and anything was better than nothing, I started to take it.  And like most times when the mantra "anything is better than nothing" is used, this anything turned out to be worse than nothing.  The side effects of the Etodolac just kept coming and my hands just got worse.  Dizziness, drowsiness, confusion, constant stomach pain, nausea, vomiting.  

Nothing made it better.  I'd surround the pill with carbs and antacids, but as soon as I'd take it--it would feel like mild food-poisoning.  Like, "Well, I know that chicken salad has been in the fridge for over a week but it still smells mostly okay."  And you eat it and immediately get that instinctual that was a bad thing I just ate feeling.  (Don't judge me, I was a poor college kid.)  Etodolac felt just like that.  

And I kept hoping it would get better (sort of like an actual rebound-boyfriend).  It was supposed to take a week or two for the benefits to kick in, and I was hoping that the benefits would start--or at least make up for the queasiness.  But it didn't.  And then with the vomiting, I just wasn't keep the pills down long enough for them to do any good.

Here's an equation for you.  If  "side effects" > "medical benefit" and "medical benefit" ≈ 0, is the pill medicine?  So far the responses I've gotten have been 1. Yes, it is recreational medicine.  2. Unless the side effects include vomiting in which case the term for that is "poison."


Today I made the call to Dr. E.  I felt like sort of a wimp that I needed to break up with this one too, but hey--  I can only spend so much time at the porcelain alter.  I have a wife to think of.  And not puke on.  Dr. E agreed that even if the Etodolac was helping my hands that the side effects I was getting just aren't worth it.  

So, on to the next one.  I feel like such a fickle girl with it comes to meds.  My new tentative commitment is to Ketoprofen, yet another NSAID with the same general side effects predicted.  I took one earlier today and so far so good as far as stomach pain goes.  I am hopeful for this one.


As for the rest of the goings on of my life:  Here is a quick run down.  

• Balloon hand finally went down by late Monday.  Today it is much more usable but I am losing range of motion in my right wrist.
• I am having great difficulty in coping with the possibility/probability of a third degenerative condition. 
• As well as with consequences of this most recent medical development. (i.e. prognosis)
• It has me angry and sad and feeling completely out of control.  Emotionally, I am at the end of my rope in terms of coping skills.
• I feel completely overwhelmed.  Like having two separate incurable, degenerative conditions I could accept somehow.  I coped with that, but for some reason this third one I just can't handle on my own.  And for some reason, I feel inadequate for that.  Even though I know intellectually that is dumb and untrue.
• I voiced today to M that I want to start seeing a counselor to help me cope/find a more positive mind-space.  (my mind-space is all Suckville right now)
• Turns out she has been hoping I would do something of the sort.
• Sent out forms to Social Security today.  I find the whole process insanely stressful and as a result of the medicine, I normally feel so run down that the act of calling them feels like the worst challenge.
• Tomorrow I will make calls about seeing someone to talk to.
• I've decided tomorrow will be better than today. 

Hand stiffness using middle finger has measure

Time: 11:42 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: 125º

R

Can touch forearm? Not a chance.  Yowch!

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

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

Much better numbers than before.

Balloon hand

Pain level: 5

Dislocations so far today: none so far

Subluxations so far today: Right shoulder a couple of times, rib on my right side last night

Meds: Etodolac--1 horse-pill, twice a day

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

I have balloon hand.  Friday morning I woke up with my right hand and wrist swollen and puffy and overall in a bad mood.  Itchy and tender.  When I tried to bend my fingers, the creases at the joints turned bright white, and I couldn't make a fist because my fingers were too swollen and the skin felt really tight (perhaps because the hand was so swollen?)  I had limited mobility in my right thumb and wrist, too.

Well, guess what?  It's Sunday and I still have balloon hand.  It does get better as the day goes on--the morning being the worst.  By about 6 PM I can make a fist with my right hand.  By 9 PM I can use my right hand with very little pain.  This lasts until around 1 AM when the stiffness/swelling comes right back.  So I have a 4 hour window in which to use my right hand.  Awesome.

Luckily, my left hand is not nearly as bad and I'm mostly used to using my non-dominant hand rather dominantly on occasions when my right arm locks up from some thoratic outlet problem or a trapped nerve, so I have been managing one-handed pretty okay.  Not that it's not crazy-amounts of annoying.


My right hand is also cold to the touch when compared to my left and it sometimes looks more blue/purple than my normal pink.  But I seem to be getting Raynaud's episodes equally in both hands, so maybe it's not a circulation issue.  It also just feels weird.  I think it's because of the swelling, but it doesn't really feel like my hand.  Not in any disconnected sort of way, but it doesn't really feel like a hand.  My fingers don't feel like fingers when I try to move them--it feels more like having a semi-flexible spoon on the end of my right arm.  Like salad tongs almost.  It feels cold and plasticy when I try to move it--even though that probably doesn't make any sense.  It doesn't listen to me--I squeeze and I squeeze but the joints won't close and the skin over my knuckles feels like it's going to split.  I don't like it.  

Here's hoping my new meds start to kick in soon.  Balloon hand is getting really old.  Oh, and M's mom picked me up some therapy putty and showed me some exercises I can do with it.  So that's good.

Hand stiffness using middle finger has measure

Time: 1:56 PM

L

Can touch forearm? Nope--and ow!

Angle of extension of the center joint of finger: 45º

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

R

Can touch forearm? Not a chance.  Yowch!

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

Angle of extension of the last joint of finger: 75º (!!!)

 

That's bad news.

Side Effect City

Pain level: 5

Dislocations so far today: none so far

Subluxations so far today: Right shoulder a couple of times, left hip last night

Meds: Etodolac--1 horse-pill, twice a day

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

Welcome to Side Effect City.  Population:  Etodolac and me.  Okay, so that's not much of a city but whatever.  

I'm playing by the rules--taking with food, drinking water until I can feel myself slosh, not laying down for over 30 minutes after taking it.  But still, since I've started taking the Etodolac I've been dizzy, drowsy, having periods where my eyes go all blurry, nausea with some light vomiting after waking up at 4AM, near constant stomach pain that feels sort of like menstrual cramps but spanning my entire belly, and my constipation is back.  Joy.  It's like I'm drunk--but without all the fun parts.  Anyway, these are all the normal, expect-them side effects and nothing to really worry about.

I did have a fun conversation with the pharmacist when I noticed that one of Etodolac's dear-lord-call-your-doctor-right-away side effects is "swelling of the hands or feet."  It's a freaking NSAID.  I'm taking it FOR swelling of the hands or feet.  The pharmacist and I had a round about chat in which he told me to immediately stop taking the drug, and I reminded him that I hadn't started taking it yet.  It seems that I will notice a complete different type of swelling or something if it has to do with the Etodolac.  

Is the stuff at least working?  Yes?  The swelling is down from how bad it was on Monday, but I'm not sure where to give the credit for that.  The pain factor in my finger joints is up, though.  Plus, Etodolac is supposed to take 1-2 weeks before the full effect kicks in.   It is doing some good.  I really messed up my left hip last night after it subluxated while I was walking across my bedroom floor.  (A dangerous deed, I know--but sometimes I can't resist.)  With how it was feeling last night, I was really preparing to wake up with the beginnings of another round of bursitis, but my hip was just sore.  Not too bad at all, considering.  

  

Hand stiffness using middle finger has measure

Time: 3:35 PM

Can touch forearm? Just just barely

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

Angle of extension of the last joint of finger: 115º

R

Can touch forearm? Nope. OW!

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

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

Dear Meloxicam (A break up letter)

Pain level: 5

Dislocations so far today: none so far

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

Meds: meloxicam--2 tablets.

Major complaint: Stenosis pain, stiffness/pain/swelling in my fingers,

hand, and wrist (R>L)

Dear Meloxicam,

We tried to make this work. Things were great in the beginning. You

made a huge difference with my inflammation. I had mobility back in

my hands and you even helped me recover from my dislocations quicker

than before. But I guess the spark is gone.

The swelling started coming back. My right hand mostly, and it was

most pronounced in the morning. I had my appointment with my

Rheumatologist to talk about it. (He introduced us after all.) His

advice was the double your dose. Maybe I wasn’t seeing enough of you.

15 mg—the highest we could go. I had hoped it would be like our first

date all over again, but it wasn’t. Nothing really changed. Sure, my

back felt better that first morning, but everything else was the same.

From what he tells me, it’s not really your fault. It’s not you—it’s

me. Apparently it’s normal in situations like this for drugs like you

to just stop working. Sometimes things are great for months or years

and suddenly they aren’t anymore. The body just gets bored.

Sometimes the honeymoon is over within weeks, like with you and me.

And again, maybe you’re still doing your best, but the amount of

inflammation is just too much for you.

I started on Wednesday and this morning when I woke up, the swelling

was worse. The stiffness in my right hand is worse too. The skin on

my joints turns white when I try to bend my fingers. And it’s spread.

My entire right hand and my wrist are now swollen, sore, and itchy.

I made the phone call to Dr. E. I’m pretty sure he will advise that

it’s time for you and me to see other people.

Hand stiffness using middle finger has measure

Time: 1:43 PM

Can touch forearm? No. Ow!

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

Angle of extension of the last joint of finger: 105º

R

Can touch forearm? Around 3 inches off. OW!

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

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

I’m not a fan of those numbers.

Test results. Sort of.

Pain level: 6
Dislocations so far today: right index finger once
Subluxations so far today: Right shoulder a couple of times, left patella once, right wrist once.
Meds: meloxicam--2 tablets. 
Major complaint: Pain at my lumbar fusion,  stiffness/pain/swelling in the joints of my hand (R>L)

Well, I had my appointment with the Rheumatologist, Dr. E, today.  No bad news, no good news.  Not a whole lot of news in general.

Blood work came back.  The retest of the ANA came back positive again.  Slightly lower than last time, but Dr. E said there isn't really a correlation of condition severity and titer levels.  The tests checking for specific ANA's that could possibly identify which disease is running around all came back negative.  Which makes me go o.O???

So, we know that these Anti-Nuclear Antibodies are in there.  But when they try to identify them, they don't show up?  Like they're misbehaving and not answering a roll call?  Bueller?  Bueller?  

Anyway--as the doc pointed out, these tests are tricky.  Any one or all of these tests could be a false negative or a false positive.  And it's not like if I had tested positive for a certain ANA that I would immediately be diagnosed with Autoimmune disease X.  OR that because I tested negative that they are ruling out this same Autoimmune disease X.  Makes you wonder why the hell bother doing the tests, right?

So, we went over my new symptoms and how the meloxicam has gotten spotty.  Here are his thoughts.   

1. Double my meloxicam.  If that works, continue with that.  If it doesn't we start going down the list of drugs like it until I find one that works--until that one stops working and we go back to the list.
2. He offered to start me on Plaquenil.  A drug originally used to treat malaria, now used in autoimmune diseases.  It takes months to feel any benefit, so we opted to wait until my specialist appointment next month and then go from there.
3. He feels that it is very unlikely that I have Rheumatoid Arthritis.
4. He seems to be under the impression now that it is either Scleroderma or Lupus.
5. That keeping in mind that diagnosing either of those diseases on their own is extremely difficult, the presence of EDS will make it even more of a problem.  Because my EDS affects all my connective tissues, and Lupus and Scleroderma are connective tissues diseases, it's going to throw off all the markers that are needed for the already shaky diagnosis.
6. He'll see me after my specialist visit. 

Here are my thoughts.

1. I hate this waiting process.  I feel like all I do is worry until I can see the next doctor, hoping they can give me answers.  Relief.  Mental relief specifically.  And it's always a we don't really know, and we'll see you a month.  Wait some more.  See this specialist.  Then likely wait.  I know I shouldn't expect answers and instantaneous results--it's just I've done the seeing doctors for 12 years before finally getting a diagnosis for an incurable condition.  I don't want to do that again.  And I won't.
2. It's good at least to know that the treatment for either of these conditions is nearly the same.  Treating symptoms and medications to confuse the immune system.  So if they get it wrong--or never get it at all--at least they won't be giving me the wrong drug.
3. I know that my body grows a tolerance to medications fast.  They stop working on me quickly.  That's why I under-medicate with my pain meds so much.  If I can ride it out, I will.  Otherwise, they'll stop working and I'll need to get more serious meds.  I don't like the idea of having a disease that needs continuous medication.  It makes me nervous.
4. I've still got until April for all this to just disappear.  Dr. E said that sometimes immune systems freak out temporarily, something that can last as long as 6 months.  After April, it will be over 6 months.  Dr E doesn't think that's the case.  But maybe it will go away on its own.  That'd be cool, don't ya think?
5. I'm scared worried tired annoyed going to be okay.  I just think too much, and don't I know it.  As my Dad put it a week ago, someone dealt me a bad hand of cards when it comes to my body, but my mind never stops moving.  I didn't stop to point out that the "someone" was half him (who am I kidding, my mom has two autoimmune diseases and carries the EDS, but you know what I mean).  
6. I'm having some trouble accepting that this could be with me forever.  Sure we can treat the symptoms, but it could be another problem that never goes away.  And I'm not sure yet how to handle that yet.  I've just come to terms with knowing that my body will never go back to the way it was before EDS/Spinal Stenosis etc.  I'm tired.  It feels like too much sometimes.  Like, can't I just have one of those?  That'd be plenty, right?  But then M gives me a hug and things seem good.  I'm glad I'm here, no matter what problems that comes with.  I just wouldn't mind knowing for sure what those problems are. 

Hand stiffness using middle finger has measure
Time: 10:55 PM
Can touch forearm?  Just just barely.  Ow.
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 very close
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º  

SSDI phone interview

Pain level: 6
Dislocations so far today: right index finger once, left elbow once in my sleep
Subluxations so far today: Right shoulder a couple of times, left patella once.
Meds: meloxicam--1 tablet. 
Major complaint: Spinal stenosis pain down both legs,  stiffness/pain/swelling in the joints of my hand (R>L)

I had my phone interview today.  Man, what a stressful happening.  I was automatically denied because I let them know that while I don't have a bank account of my own, my name is on my mother's account and M's in case, gods forbid, that anything happened to them, someone will be able to pay their hospital bills, etc.  Unfortunately, according to Social Security rules, this means that I have full access to all the money in those accounts and that disqualifies me as an applicant.  So since I can legally walk into my mom's bank and drain her account, despite it not being my money and that making me a rat bastard,  I am apparently a very wealthy individual.  I couldn't even give her the balances of the accounts, which she needed to know, because I simply don't know what is in the account besides my name as a secondary.  Ugh.

So.  I have until April 1st to mail them documentation that my name has been removed from every bank account that I'm on.  (At which time I will be denied anyway because that's how it goes until I appeal 17 times, right?) I was pretty sure this was going to be how it went down anyway, but I figured it might look suspicious if I didn't have a bank account, but had taken my name off several accounts right before I filed for disability.  This way, I'm doing it because they told me to.  

She asked me a thousand questions, many of which I had no idea how to answer.  Most of them I had anticipated and had a Word document full of my info.  But things like the name, address, and phone number of the doctor who diagnosed me with my nobody-can-explain-why-it's-there lumbar spinal fusion back when I was 12 years old?  I don't have a clue.  I was 12.  I didn't write that stuff down.  I didn't think I'd be filing for benefits 14 years later.  What year was that?  Uh, I was 12 so... *counts on fingers* 1998?  I doubt he still even works at that hospital.  What month was it?  Are you kidding?  I'm gonna say it was spring.  Completely arbitrary I recollect that it was sometime around spring vacation.  o.O  

Strangely enough, that spinal fusion is the thing she really focused on the most.  Not my Ehlers Danlos, which I marked as being the most contributing factor in my disability next to my Lumbar Spinal Stenosis.  She asked if I had any idea which vertebrae were found to be fused, obviously deterred at this point by my inability to recall phone numbers from 14 years ago (that as a 12 year old, I'm sure I never saw).  
Confused, I told her, "The whole thing.  My lumbar spine is fused." Which is what I thought "lumbar spinal fusion" conveyed. 
 To which she replied, "Oh my God!  You can't bend?!"
"Uh, nope I can't bend my lower back.  I can bend with my thoracic spine and my neck, but not my lumbar."
"Oh!"
This exchange puzzled me.  I presume that Disability benefits applications is what this woman does for a living.  I am NOT the person out there who is the worst off.  Not even close.  (Nor is my spinal fusion the worst of my worries.) I'm not saying I'm up to go out and reside the house, but there have got to be people calling her that have had limbs ripped off in industrial accidents, or spinal injuries resulting in paralysis.  Does she then exclaim, "Oh my God!  You don't have legs?!"  I should hope so.  Because not bending is annoying and the fusion can be severely painful, but I mean, really.

So that was that.  Joints have been sort of average today.  Knees are still giving me trouble.  I found a third splinter hemorrhage on my left middle finger.  It's small, about the size of the one on my right index finger, but definitely there.  

I need to go write up a list of things to cover tomorrow with Dr. E.  Hope you all out there in Internet-Land are doing well.

P.S.  There's still water coming into the basement.  They bail it out and it comes right back in. Yuck.

Hand stiffness using middle finger has measure
Time: 8:23 PM
Can touch forearm?  Just just barely.  Ow.
Angle of extension of the center joint of finger: 65º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? not very close
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 110º  

Basement flooding? Why yes, we have that in stock.

Pain level: 6
Dislocations so far today: right index finger twice
Subluxations so far today: Right shoulder a couple of times, right patella once, left patella twice.  Ew.
Meds: meloxicam--1 tablet. 
Major complaint: Spinal stenosis pain down both legs,  stiffness/pain/swelling in the joints of my hand (R>L), general joint looseness worse than normal.


Several inches of water in the fully furnished, and did I mention carpeted, basement.  Huzzah.  They bailed it out by 8PM.  Just checked again at 10PM and the water is all the way back up to nearly 2 inches.

The meloxicam does seem to be kicking back in though, which is good.  Hands were movable this morning again.  Although my mom kept commenting on how shiny my fingers and knuckles look, which isn't very encouraging unless I was really gunning for a diagnosis of Scleroderma.  Ugh.

I've also noticed that I've got these tiny vertical black lines on the nails my right index and middle finger.  They begin and end before the white part of my nail, but they are very small.  I think they're called splinter hemorrhages.   Have to remember to bring that up to the doc on Wednesday.

I got mail from my Rheumatologist that I was hoping would be my blood test results so I could maybe say right away, "Hey look at that! My ANA is back down to normal levels!"  But it was a bill.  Doctors are always telling me one amount for the copay and then bill me for the real number.  Hey, I'm not a secretary--maybe paperwork is fun.   

Social Security phone interview tomorrow.  I got all my information ready today.  I am super nervous.  

Joints were all loose in their sockets today.  Tons of thunks and subluxations and feeling like I was about to fall down.  I subluxed my right kneecap and while I was still in the Ow!Ow!Ow! stage and hopping on my other leg, subluxed my LEFT kneecap.  Come on, guys.  I really need more than 15 seconds between limb malfunction.  It's been one of those days.

Hand stiffness using middle finger has measure
Time: 10:35 PM
Can touch forearm?  Just just barely.  Ow.
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? not very close
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 110º  

So much rain

Pain level: 6/7 depending
Dislocations so far today: left elbow
Subluxations so far today: Right shoulder a couple of times, right wrist
Meds: meloxicam--1 tablet. 
Major complaint: Spinal stenosis pain down both legs,  stiffness/pain/swelling in the joints of my hand (R>L) 

It's raining like mad again and my stenosis pain hasn't gotten any better.  My hands, however, have!  *dances*  The past two days, my fingers have been nearly back to the "normal" I was at before the Meloxicam started to crap out on me.  So maybe it's working after all.  :)
 
Okay, maybe this is just my experience, but Kohl's has the WORST wheelchairs--hands down.  After being on 24hour puppy-duty, M and I went out to eat at our favorite restaurant and she wanted to walk around Kohl's (next door to the place) afterward.  I walked for about 5-10 minutes with my cane, but the nerve pain was starting to get really bad so we were going to go back to the car to get my chair.  Oops.  We had left the seat at home.  I had wheels and a frame... Go us.  Nicely done.  So I decided to use one of the chairs offered by the store.  Man, that thing was messed up.  

The first one I sat in had no footrests.  At all.  Now, I'm wicked short--5 feet even--but even my feet were dragging on the ground in this one.  We did manage to find one that had one footrest.  Just the left one.  What?  In what situation would that ever be more functional than both?  So that one it was.  Luckily, I have tiny tiny feet and was able to balance my cane on the footrest and smoosh both feet on top of it to keep it there.  But when I pushed off, only one wheel really worked.  Like having a bad shopping cart that really really wants to go left no matter how hard you push.  AND the front casters/wheels were so big that anytime I tried to maneuver the chair around, left front wheel would slam into my ankles.  Who designed this thing?!  Anyone who has tried to go shopping in a chair can tell you how hard it is to fit a wheelchair down the winding aisles--and when you can't maneuver correctly?  Man, I was bumping into everything.  It was like my first day in a chair all over again.  M tried pushing me, but she slammed me into things just as bad as I did.  At least we had fun laughing our butts off about it. 


I assume they put these chairs there to be helpful.  Maybe they assume no one really uses them? Maybe they should try sitting in them sometime.  Maybe they're just there for the employee's amusement as I bash my leg into things.  Who knows.

I was absent here yesterday as we were pet-sitting this little munchkin of a Shih Tzu named Casey.  Cute and emotionally high maintenance.  Her Daddy (6'3", general contractor, super straight, dating M's mom)  calls her Casey-girl and Little Miss Waggy Tails.  Adorable.  She's a complete sweetheart but was horrifically abused by the first woman who owned her.  (she's a rescue pet.) Which equals: no one but Daddy can be trusted.  She warmed up to us eventually, but is just a twitchy little pup.  Kept us busy.

Hand stiffness using middle finger has measure
Time: 7:38 PM
Can touch forearm?  Just just barely.  Ow.
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? not even close
Angle of extension of the center joint of finger: 55º
Angle of extension of the last joint of finger: 115º  

Dear Meloxicam

Pain level: 6
Dislocations so far today: none
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.  Considering pain meds to sleep
Major complaint: Spinal stenosis pain down both legs, much more stiffness/pain/swelling in the joints of my hand (R>L)  Also in my feet and wrists. 

Okay, Meloxicam, we had a good thing going.  And while I appreciate that your high concentration of anti-inflammatories haven't burned a hole into my digestive tract, you're also allowing my hands to swell up again.  I woke up several times during the pre-dawn hours because anytime I would flex the fingers of my left hand in my sleep, the pain would wake me up.  I don't get a whole lot of sleep in the first place, Mel--Can I call you Mel?--and I really need the sleep that I can get without my hands interfering along with every other joint.  At the times I would wake up, I could barely move my left hand, but my right hand, the bad one, seemed to be doing fine.  

But when I woke up for good in the morning, it was my right hand that was a mess.   I could tell even before I looked at it or felt it with my other hand.  The middle joint on my right index finger was immense. It just felt wrong.  Big.  And it was.  It still is.  I tried to move my right hand, and it was back to pulling with all my might, but the fingers barely curl.  Great, Meloxicam--this is what you are supposed to be preventing.  This is your job.  My job is to take you with food, drink water until I feel like a washing machine, not lay down for 30 min, and not complain too much about how dizzy you make me.  I do my part--you're getting lazy.  

It's 3PM now and the pain has come down enough that I can finally use the finger, which makes typing much easier.  I can almost make a fist with the rest of my hand, but that index finger still sticks up no matter how hard I try to squeeze it down.  The knuckle is puffy and it doesn't even straighten all the way.  Fun stuff.

Also, while I appreciate that my hips are doing loads better today, I was not made aware at the beginning of our relationship that you can only work on one problem at a time.  I need a medication who is willing to multitask.  You understand, right?

However, I really shouldn't ignore the fact that there is a chance that you ARE doing your job, but my body has thrown a truckload of inflammation at you that you simply are not equipped to handle.  Or maybe the main issue is that my skin is tightening, causing the lack of mobility, and I don't think you can do much about that.   If that's the case, you are trying your best--my apologies.  If not, step it up.  
 
Hand stiffness using middle finger has measure
Time: 3:31 PM
Can touch forearm?  Just just barely.  Ow.
Angle of extension of the center joint of finger: 55º
Angle of extension of the last joint of finger: 110º
R
Can touch forearm? *laughing* NOT AT ALL
Angle of extension of the center joint of finger: 30º
Angle of extension of the last joint of finger: 80º  HOLY COW! 

Spring is in the spine--I mean air

Pain level: a solid 7
Dislocations so far today: left shoulder last night
Subluxations so far today: Right shoulder a couple of times, right scapula a couple of times
Meds: meloxicam--1 tablet.  Considering pain meds to sleep EDIT: Didn't take pain meds.
Major complaint: Spinal stenosis pain down both legs, lower body is still a wreck, more stiffness/pain/swelling in the joints of my hand (R>L)  Also in my feet and wrists. 

Spring is on its way.  I can tell because it feels like someone wearing stilettos has stuck their heel into my lumbar spine and is pulling with all their might on my arms and legs.  That's sort of what spring feels like to me.  Which sucks because I love spring.  

I can tell shit is up because I can no longer stand up straight.  My lower back is hunched, and if I try to tilt my hips forward and force my posture into correctness, I get terrible nerve pain down my lower back and straight down the backs of my legs and into my feet.  As the day goes on, I can't sit upright either.  I'm hunched over trying to sit in a chair.  When I take a break to lay down in bed, I have to prop my back up with pillows and prop my knees up in a bent position with more pillows.  I feel a total mess.  

Add on top of this, my hips haven't gone back to normal yet.  I'm still getting grinding and popping and a TON of tenderness in my hips.  Walking is an adventure.

I think scared M last night.  We were sitting on the floor petting the dog and I reached around to scratch my back and my left shoulder dislocated.  Not abnormal, true.  But what was weird was that M could see it happen.  Out of the corner of my eye I could see my left shoulder drop over an inch along with a loud Thunck.  The pain was right there and the weakness/numbness.  M helped me reduce the joint like always, but she looked more freaked out than usual.  I mean, my shoulder normally looks off when it dislocates, but it normally comes out in the front, and this was definitely a dislocation in a different direction.  Bleck.


Hand stiffness using middle finger has measure
Time: 10:20 PM
Can touch forearm?  Just just barely.  Ow.
Angle of extension of the center joint of finger: 65º
Angle of extension of the last joint of finger: 120º
R
Can touch forearm? not even close and that hurts!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 115º 

ClunkClunkGrind go the hips

Pain level: 6/7 getting worse as the day goes on
Dislocations so far today: right wrist once
Subluxations so far today: Right shoulder a couple of times, left elbow once, right scapula a couple of times
Meds: meloxicam--1 tablet.
Major complaint: Lower body is a wreck, more stiffness/pain/swelling in the joints of my hand (R>L)  Also in my feet and wrists.

My hips are still killing me today.  From the front on my hips near the juncture at my inner thighs all the way around to my butt, it feels like the muscles are revolting.  Nothing wants to work properly.  At nearly every step I take, I can feel a grind or a snap on the outside of my hip as the step is at a point when I have put full weight on that side and am about to set my other foot on the ground.  Hopefully this will the be worst, and tomorrow will be better.  Worse on my right side than my left.  (As it generally tends to go, it seems.)

So I've still got a pretty good hobble on today.  Just have to start practicing my Igor voice.  Yes, Master--yes! *limp limp*

More swelling and itching of the skin on my hands and feet.   One week until my Rheumy appointment.  Can't wait.


Hand stiffness using middle finger has measure
Time: 8:12 PM
Can touch forearm?  Yup, and it didn't hurt too bad.
Angle of extension of the center joint of finger: 65º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? not even close and that hurts!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º

Just when I was about to call in the cavarly

Pain level: 6/7 depending
Dislocations so far today: none
Subluxations so far today: Right shoulder a couple of times
Meds: meloxicam--1 tablet.
Major complaint: Lower body is a wreck, more stiffness/pain/swelling in the joints of my hand (R>L)  Also in my feet and wrists.

Social Security called today.  I was about to give the local Attorney General a call, like I'd been advised, but this morning, before I woke up, the phone goes a-ringing.  Mind you, this is how the conversation started.

Mumbling Dude,"Hello, this is the Social Security office for InsertTownHere."

Sleepy Me, "Hello!  Yes!"  Some how I managed not to say FINALLY!

Mumbling Dude, "Is Erica there?"

Sleepy Me, "Uhh...No?"  *panicking* 

Mumbling Dude, "Oh..."

Me thinking: Oh shit oh shit--don't let him hang up!!

Mumbling Dude, "Is MangledPronounciationOfMyName there?"

Sleepy Me, "YES!  Yes, that's me!" 

 Long story short, I have a phone interview set up for next week.  I'm nervous but glad we're finally moving on past them never calling me back.

The bad news is that since my phone rang while I was asleep, I epically leapt out of bed the second it woke me up to get to it.  This is no good for my joints.  My body needs to be eased out of sleeping-stiffness/pain into moving-around-pain.  And jumping out of bed = me limping like a complete gimp the entire rest of the day.  I feel like I pulled every muscle in my body below my waist.  And I'm unsure why my body reacted that way.  I mean, my butt is killing me.  All the muscles around my hips don't want to take weight, which makes walking hard.  For this sort of thing to happen, I'd at least like to have had reckless, acrobatic sex the night before, but alas, this is just from getting the phone.  D'oh!

Hands were a little better this morning.  Not much though.

I'm going to try to start putting some pictures up on here so it's not so boring to look at.  Hopefully tomorrow.
 
Hand stiffness using middle finger has measure
Time: 10:21 PM
Can touch forearm?  Yup, and it didn't hurt too bad.
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? not even close and that hurts!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º

It's not a fluke

Pain level: 4/5
Dislocations so far today: left elbow once
Subluxations so far today: Right shoulder a couple of times,  left index finger once.  Last night subluxed my left hip, right knee, ribs on my left side, and right shoulder--all within a minute.  Sometimes I'm not sure why I'm not just celibate.
Meds: meloxicam--1 tablet.
Major complaint: more stiffness/pain/swelling in the joints of my hand (R>L)  Also in my feet and wrists.

Today's News:  The symptoms are coming back and now they're spreading to wrists, feet, and the skin around my mouth.  My lips are feeling tighter, like I can't open my mouth as wide without pain.  From my chin to my nose feels like I have a sunburn, which I don't.  But you know that awful creasing, stiff, stinging feeling you get when you have a sunburned face?  Yeah that--that's what I have.  My hands and feet feel the same way at night when I'm trying to sleep.

And everything gets itchy!!  My face, my feet, and especially my hands.  I'm trying not to scratch it and I keep throwing more and more lotion on, but I go through an hour at a time when I feel like I have the worst hives, but nothing is there.  Then it goes away.  Weird. 


I also now have what M is calling "balloon hands."  It's not as bad as you think.  When I make a fist (or as much of one as I can at the time) the skin over my knuckles turns bright bright white, and I think that it feels just extremely smooth.  But M ran her fingers over my knuckles and immediately announced that my skin feels just like touching a latex balloon.  Probably not the best sign.  But hey--super smooth skin, right?  Too bad I also happen to have an irrational phobia of balloons.  :<
 
Hand stiffness using middle finger has measure
Time: 10:21 PM
Can touch forearm?  Just barely--and OW!
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? not even close and that hurts!
Angle of extension of the center joint of finger: 55º
Angle of extension of the last joint of finger: 110º 

What a few words of faith can do

Pain level: 4/5
Dislocations so far today: left elbow once
Subluxations so far today: Right shoulder a couple of times,  right index finger once.
Meds: meloxicam--1 tablet.
Major complaint: more stiffness/pain/swelling in the joints of my hand (R>L)  Also in my feet and wrists

Sorry I've been absent.  I had a spell of actually starting to freak out about the possibility of my having a full blown autoimmune disease, and it was better that I just ignore some of this stuff for a while.  Doing better now though.

The bad news:  I woke up today unable to make a fist again.  I had taken my meloxicam like normal last night, but the stiffness was much much worse in my fingers on both hands, and my right had was pretty immobilized.  I could still bend my fingers, just not all the way down.  Don't have to say this, but I will--This worries me.  I'm worried that the NSAID's have just stopped working--or are no longer as effective.  I'm scared that whatever this new thing is that is happening to my joints is just progressing so much so that the meds are working fine but this is how much worse the condition has grown.  I'm worried about how my joints would actually feel if I didn't have the meloxicam.  

The pain in my finger-joints wasn't as bad today as without the meds, which is good.  But I am starting to get that same pain in my wrists and feet.  In the morning, when I move my toes, the front half of my foot turns bright white--as though I have hives or a really bad sunburn.  I'm ready to know what's wrong.  I just hope that tomorrow morning I wake up with the meds working well again and I can brush today off as a fluke.

Raynaud's has been crazy-bad recently.  Today I lost all but my two thumbs for a long time until I could get the blood flowing again.  Even then, it came back in patches, which looked really odd--like my hands were spotted with red and white splotches.   Keeps happening a few times a day and it seems like it takes longer and longer to get feeling back.

We went to a party the other night with a bunch of friends.  We dressed up to the 9's and beyond which was funny since I'm usually a tomboy.  My friend told me that I shouldn't worry so much--that even though he keeps hearing that the doctors are finding more and more wrong with me, that every time he sees me, I keep looking stronger and stronger.  I was really surprised how much that affected me.  I don't feel stronger.  I emotionally feel worse than I did a year ago.  Physically, about the same just different.  But knowing that my friends are confident that I will be stronger than whatever this is, really makes me feel like I need to be and can be.  Like I'm doing a good enough job faking it that they still have faith in me, so maybe I have the strength for it not to be a show.
 
Hand stiffness using middle finger has measure
Time: 7:31 PM
Can touch forearm?  Just barely--and OW!  That made most of my finger turn bright white too!
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 MAN! that hurts!! same whiteness on this finger.
Angle of extension of the center joint of finger: 50º
Angle of extension of the last joint of finger: 110º 

Listening to busy signals gets old

Pain level: 5/6
Dislocations so far today: right ankle once, right index finger once
Subluxations so far today: Right shoulder a couple of times,  right scapula a bunch of times, left hip once last night
Meds: meloxicam--1 tablet.
Major complaint: Hip pain, some stiffness/pain/swelling in the joints of my hand (R>L)

I must have called the Social Security office over 20 times today.  Always a busy signal.  I never even got to leave my standard message as normally instructed.  I'm not sure how I can get a busy signal all day from a machine.  It's not like there is a human being to be unavailable.  And, surprise,  I haven't heard back from them since my call on Monday.  I'll try again tomorrow.  Their number is now officially in the contacts of my cell phone so I could intermittently call them while out on errands with M.  Which makes me feel like a total dweeb.  

I subluxed my good hip last night--which always pisses me off, because that's the hip I rely on not to give me shit.  They were feeling a little unsteady, so I was trying to concentrate on keeping my bad hip (the right one) from slipping out.  And I managed to!  And as soon as I was happy and satisfied that I'd kept my right hip in--out goes the left one.  At least it wasn't out all the way, and man, that makes a really loud thunk when it goes back in. 

More bad Raynaud's today.  And something else weird that I've been noticing.  Now this may be nothing or silly, but the skin of my fingers has been holding the impression of other shapes a lot recently.  I know that doesn't make much sense.  Let me try to clarify.  If you squeeze your index and middle fingers with your other hand, nothing normally happens (or at least that's how it worked for me).  But imagine what it would look like if you squeezed a finger sized PlayDoh snake. Your squeezing hand leaves an impression.  Well my the skin of my fingers have been doing that--leaving finger shaped indents for 10-15 seconds after I let go.  Which is weird to me.  Not sure if that's normal for other people though. 


Hand stiffness using middle finger has measure
Time: 11:07 PM
Can touch forearm?  Just barely--and OW!
Angle of extension of the center joint of finger: 70º
Angle of extension of the last joint of finger: 130º
R
Can touch forearm? not even close and MAN! that hurts
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º 

Having a mostly good-joint day

Pain level: 3/4
Dislocations so far today: right ankle once
Subluxations so far today: Right shoulder a couple of times, right wrist once, right scapula a bunch of times.
Meds: meloxicam--1 tablet.
Major complaint: some stiffness/pain/swelling in the joints of my hand (R>L)

Joints have been better than average today.  Kind of neat.  I mentioned how much the new meds are making a difference to my dad and he told me to call and tell him every day I'm having a good day--because it makes his.  He's a good guy, you know? 

I did some cleaning today that I've been wanting to do for months and it felt really good to get something accomplished.  Going through my things I found about 30-40 old love letters (yeah, I know, he was prolific) from my ex-boyfriend--best part was when we was glancing through them, my eyes landed on the phrase, "like in 'Cool Runnings.'"  Wow.  Pretty awesome. 

My stupid scapula on the right side keeps subluxing.  Every time I move that arm up and down it just goes THUNK THUNK THUNK.  Yuck.  It's that same shoulder that subluxes if I look at it wrong so I shouldn't be surprised.

I've been having a hard time trying to tell if my mouth/lips feel tight when I open my mouth wide.  I'm supposed to be keeping track of that sort of thing for the possible scleroderma.  Well, when I open my mouth wide, it hurts.  It feels pulled tight like a sunburn and my skin around my lips turns white.  Here's the thing though--is this a new symptom, or they have always felt that way but I haven't bothered opening my mouth wider than normal in a while?  How do you tell? 

Hand stiffness using middle finger has measure
Time: 11:18 PM
Can touch forearm?  Just barely--and OW!
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 MAN! that hurts
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 110º 

Admitting my creeped-out-ness

Pain level: 4
Dislocations so far today: none yet
Subluxations so far today: Right shoulder a couple of times, right wrist
Meds: meloxicam--1 tablet.
Major complaint: more stiffness/pain/swelling in the joints of my hand (R>L)

Feeling off today.  Nothing really new for me--I'm just feeling like I'm coming down with a cold or something.  Run down, a little dizzy, pressure behind my eyes.  

Here's what I really need to do:  Stop thinking about all this autoimmune crap.  It's not helping.  Sure, I am super ready to see the Rheumatologist for answers about my latest bloodwork (March 17th) but that's weeks from now and reading every damn article I can find on ANA titers and patterns and early signs of scleroderma (totally vague by the by) is not going to make the wait any easier.  I just hate being uninformed, and having to wait to be informed makes it harder.  And I'm sure that having undiagnosed Ehlers Danlos for 13 years before I finally said, "Hey, docs?  Can we try to rule out this EDS thing?" Docs, "Huh, why didn't we think of that,"  doesn't help with my ability to let go and trust my medical professionals to think of everything.  

Here's my problem.  I am freaked the hell out by autoimmune diseases.  Heebie jeebies, the willies--whatever you call them, I get them from thinking about this stuff.   It's not the consequences or the pain that scares me the most--my mom has two autoimmune diseases and is far more functional than I am--it's the actual nature of the disease.  I'm a fighter.  Whatever my body throws at me, I can deal with.  But for some reason, the idea that likely my body is bascially shooting itself in the foot while I sit here and type and wait for test results is just plain freaky.

It's creeping me out!  For those who aren't familiar with the general nature of autoimmune disease like Rheumatoid, Lupus etc--here's a quick run down.  

• Your body has a defense system.  That'd be your immune system.  So when you get the chicken pox because little Joey hugged you in 3rd grade before his parents noticed those little red dots, your immune system says HOSHIT! and kicks into gear cranking out antibodies to try to fight off the virus.
• These antibodies are very specific.  That one type of antibody can only ward off chicken pox.  It's useless for the common cold or anything else.   It's like a key that only fits into one type of lock.
• Once your body has fought off the virus, your immune system keeps some of these chicken pox antibodies kicking around in your system in case that stupid virus tries to come back.
• In autoimmune diseases, something has gone wonky and your immune system starts creating antibodies.  Except that these antibodies are programed to attack the tissues of joints for example.  So for some reason, your body has identified parts of itself as foreign enemies that must be destroyed.  And it tries to do just that. 
  

 That's creepy!  Okay.  I've gotten that out of my system, maybe I can finally stop worrying out having something like that IN my system. 


My hands weren't has bad this morning than yesterday which is good news since I'm worried my NSAID's will suddenly stop working.  Center joint of my right middle finger is giving me trouble all day today though.  That unique throbbing pain that feels nothing like the pain I get with EDS.  

I called Social Security again this morning.  I figure I will give them one more week before I "complain to their boss" as it were.  Didn't get a call back today.  Maybe tomorrow. 

Hand stiffness using middle finger has measure
Time: 5:18 PM
Can touch forearm?  Just barely--and OW!
Angle of extension of the center joint of finger: 60º
Angle of extension of the last joint of finger: 125º
R
Can touch forearm? not even close and MAN! that hurts
Angle of extension of the center joint of finger: 55º
Angle of extension of the last joint of finger: 110º