Friday, July 30, 2010

Things that go bump in the night

Or creak, rather.

Close your eyes and pretend with me for a moment.

It's 1130 at night. Your in bed. The lights are off. The house is dark. You hear a creak. A creak that sounds like a door creaking open. ITs there someone in the house?

Nope. Nobody that's not supposed to be. Then you realize the creaking is coming from you! It's your shoulder rubbing. Winding down for the day and reminding you that its still there and still isn't what it used to be.

Now have a little chuckle and be happy its a creaky shoulder and not something else going bump un the night.

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Thursday, July 29, 2010

Green, NTR (for my old work buds)

It's been a quiet week, with nothing to report.

No new issues have popped up.

Last week at the beach I thought I caught a cold, but it cleared up in a day or so, so it must have just been the difference in climate. By the end of the week, I felt my lung rubbing, but that has cleared up too.

I'm back down to 2 band-aids and they are more for protection than anything. The knuckles are still really painful if rubbed or bonked and are really a pain in the butt, however, what's new, right?

I was playing with the webcam today and noticed how awkward my hands really look. Seeing them from an "outside" perspective is interesting ... It really does look like I have pirate hooks. Argh! Yes, I'm poking fun at my situation, its a good coping mechanism. If you can't find the humor in it, it'll get you down.

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Wednesday, July 21, 2010

Good appointment

Saw the rheumatologist on Tuesday.  A good appointment!  What?  Say it isn't so!

Blood work looks good.  For the 2nd month in a row.  Have I mentioned that this is the first time in 5 years that I've been labeled with the word normal for anything?  Of course, I have.  Just re-iterating the point.

It seems great to say!

We decided to lower the prednisone.  In 3 months when I go back, if everything still looks good, we can stop it all together. 

We're keeping the amlodipine the same.  It's really helpful with the Raynaud's.  It tends to make me retain water in my ankles in the summer ... hence the cankles.  We've decided that the cankles aren't frequent enough and are manageable so I will continue this path.

I need to get my PFTs done in 3 months.  I'll be due for my cardiology appointment and will do another rheumy appointment at that time too.  Just to get it all done at the same time.

If they go well, I can move the next appointment out to 6 months.  6 MONTHS!!!  Again, over 5 years since there have 6 month appointments!   Holy crap on a cracker!

Monday, July 12, 2010

No title for today's blog.  It's just an update.  No specific news to focus on.

We'll start with the bad and end with the good.

The bad ... 4 fingers have pressure sores and therefore have my favorite spot bandages on them.  They hurt.  They are tender.  I hate them.  But, what can I do?  Yell when I whack them on things.  Be happy when I don't.

My hands, in general.  Let's just leave it at that.  Bleh.

I'm getting a pressure sore on one elbow.  I think from yoga.  I end up using my forearms and then rocking on to my elbows a lot to get into some of the postures.  I'm keeping an eye on it, but hoping it will just be a quick scab kind that will dry up and fall off.

My hips are still "creeky" at night.  Kind of eerie sounding some days.  Like an old rusty hinge you hear on doors in horror movies.

The lung irritation?  It comes and goes.  Some days I feel it.  Some days I don't.  If it's not hurting or making it hard to breathe, I think some days, I just block it out.

Ok, so enough with the bad ... on to the good.

The sore on my arm is all healed up.  The scab fell off the other day and the skin color around it is finally starting to even out.

The big white patches on my wrist are going away too.  So are the ones around my mouth.  I don't spend much time in the sun, but I apparently really absorb it when I do!

The tight "Sclero skin" on my upper arms is almost gone.  There is just a small band around each arm.  I might even be building some "guns" under there!  LOL!

Oh ... and I'm starting to see some 6-pack abs!  My stomach muscles are getting rocked every week in yoga!  We really do a lot of "core" work in that class! 

Heck, we work the whole body.  Like I said, I'm getting some upper arm definition back, my abs are starting to be defined, my collarbone doesn't stick out anymore and my shoulder blades aren't as bony.

I had no idea the postures could be modified so much to work for me.  To actually work with my limitations.

I bought "normal" sneakers about a month ago.  Pretty ones with "sclero teal" accents.  Starting 3 weeks ago, I can put socks on by myself and with the aid of a ruler, I can put the sneakers on by myself too.  A huge accomplishment!  It's not easy, but no longer impossible.  I can't tie them, so we have the curly shoe laces in them, but hey, it's a start!

I haven't gotten the blood test results back yet.  I'm just waiting until we go to see the rheumy next week.  Hope it's a good, uneventful trip and maybe, just maybe, he won't make me come back for 6 months.

Hahahaha!  I crack myself up!  I haven't gone more than 3 months without seeing that man for 4 yrs now.  Not that I don't like him.  I'd just like to see him less!

Saturday, July 3, 2010

A good phlebotomist

is really worth all the money in the world!  Really!

In MD, the phlebotomist at the Scleroderma Center was always able to stick me with one try and get all the blood they needed out of my one teeny tiny little vein.  This only seemed to happen AT the Scleroderma Center.  And unfortunately, my insurance wouldn't covers getting my labs done there.  :-(  So, I often had to go elsewhere, and hope and prey that the person working would listen when I said to use a "baby" needle and that THIS was the only little vein I had.  That, if they could get into it, it would give them all the blood they needed.

First, everyone seemed to hate life and their job.  I always seemed to get the grumpy butt!  Most times the technician would argue with me and tell me there had to be a better vein to go into.  Nope.  Sorry, this is what you get.  Then, they likely would blow through it, cause a huge bruise and so on.  I dreaded blood work.

The move to FL has been positive on that front too!  I have a lab here in town that I faithfully go to every first Thursday of the month.  The lady at the front desk looks a little like she's always mad or irritated, but she's always pleasant and quite funny!

There are 2 nice ladies that do the all of the blood draws and both are great!  They great me happily every month.  Ask about yoga.  How my Scleroderma is doing.  How I've been feeling since last month.  They both know that I've got that one little vein.  They both instinctively use the baby needle.  They both don't leave the tournaquet thing on my arm too long.  They both also know not to tell me when the stick is coming.  I like to watch after it's in my arm, but don't like to know when it's coming.

It's so nice to not dread or even avoid the lab anymore!

Friday, July 2, 2010


Took awhile to get moving today, but when I finally did, all was good!  Yesterday's icky, achey, soreness was just a day long!  Whew!

And I remembered to get blood work done today!

Thursday, July 1, 2010

One year later

Today marks the 1 year anniversary of having my index finger "lopped off."  

It's been an easy adjustment.  I wasn't really using it before I had it chopped off.  It always had a sore on it.  Hence, the chopping off!

I still get phantom feelings.  Sometimes I get the feeling that the finger is itchy.  The main nerve that used to run through it is still there.  It's just tucked into the remaining muscle in my hand.  So, there is the "phantom feeling" that it's still there.

The incision site is barely noticeable.  I can wiggle the bone that's still in my hand.  It feels very neat!

Most people don't even notice the finger is missing.  I think people can tell something is different.  They just aren't sure what.  You can notice they are trying to figure out what is "off," but unless I tell them, I don' think they notice.


Today I didn't want to get up for yoga.  My body was tired with no giddy up and go.  Not even for yoga.  I was sore and just blah.  I almost canceled going to class.  I thought better of it.  I knew that it would be fine once I got up, got moving and went to class.

I felt like I was very "disconnected" in class today.  I know I didn't put in my best effort.  Again, I just wasn't feeling it today.  I even got a few muscle cramps in some of the postures.

The hubby and I met for lunch and then I came home and took a nap.  A 3 hour nap.  3 hours?  When on Earth was the last time I did that?  I couldn't even tell you.

I woke up from the nap feeling just as sore, achey, and wiped out as I had in the a.m. 

And then I realized, I forgot to stop at the lab for blood work.  Oops.  Guess I WAS tired!  Good thing there's always tomorrow.