The list

In an effort to feel like a somewhat contributing member of society, I volunteer a couple hours a week at the local animal rescue.  Everyone already knows that.  I also wanted to do something to help kids.  I found a great place here in Tampa that needs volunteers.  I filled out the application, took the tour, set up the appointment for the necessary finger printing portion of the background investigation.

See where I'm going with this?

I drove the 40ish minutes to the fingerprint place, to leave with not 1 single usable fingerprint.  I knew this would be the case.  I wasn't surprised.  I had this issue the previous 2 years when trying to get fingerprinted for my work badge.

Doesn't mean it's not frustrating and disheartening to be reminded.

Knowing it was going to happen still didn't hold back the tears when I got to the car.

It's just another addition to the list.  The list of things Sclero makes it impossible for LoJo to do.

Chat Schedule

I have decided to set aside time, the 4th Tuesday of every month @ 7 p.m. ET, for anyone interested!

$%#^%$&^^%$#!@&&*!$%

I finally caved and bandaged the two finger sores last night.  They were hurting too much.  They were throbbing and aching and I couldn't take it anymore.

I've discovered that, sores are like snowflakes.  Not in the pretty way.  But in the fact that it seems no two are ever the same.  Sometimes keeping them covered doesn't seem to do anything, but prolong the healing process.  So, leaving them uncovered is good.  Other times, leaving them uncovered, makes them ache and throb.

Every time I get them, I swear they are the worst pain that I've ever experienced.

I have a sore on my elbow.  Almost healed.  Then, I bonked the elbow on the wall.  Hard.  Enough to break it open, leave gunk on the wall, make it bleed, and leave me crying.

I hit the ulnar nerve.  The funny bone.  Which, as we all know, is NOT funny!  I don't know if the Sclero affects that nerve or not.  I'm guessing the tightening of the skin and tendons make it different.  The sensations surely are.  For the past few years whenever I've hit the funny bone, it doesn't send the same sensations it once did.  It hurts now.  Really hurts.

The tingling sensation and pain lasted for a couple of hours.  My pinky and ring finger were numb and drawn in more than usual.  They were weak and almost useless too (more-so than normal).  It was kind of alarming.

This afternoon, it's mostly better.  There's still a mild  tingling those 2 fingers.  The elbow is still very sore.

Yes, I did say afternoon.  I slept from about 2 or three until noon.  Woke once to take some meds, get a drink and use the bathroom, then out I went again.

It's going to be a quiet Christmas around here.  Nothing exciting going on really, but couldn't I get a break, for the holidays?  Geesh!

Have I mentioned that the sores rank in my top 3 for things of Sclero that drive me over the edge?  Cause meltdowns.  Sometimes, even mild hyper-ventilations.

Of EVERYTHING else; the lung issues, the joint aches, the heart problems, the invasive tests, the poking, the prodding, the fatigue, even the "crappy-assed" hands ... the sores are one of the worst.

A little light reading

It's been one of those days.  The combination of my super sore hands and the 2 hour long phone meeting with the disability lawyer have left me in a funk.

Not a permanent one, for sure.  Just a "feel sorry for my situation" couple of hours.  And not my whole situation, of course, just the scleroderma part.  And not even the whole scleroderma part.  No, I don't like having any part of it.  But, I do like the me that has emerged from it.  I like what I've learned about life and the person I need to be.

On the other side of all that feel good hoopla, I've had a couple of hours of feeling crappy.  Sore hands. Tired of the repeat performance of those hands.  Again?  Really?

So, I've had a good cry with Voodoo.  Some time to feel sorry for myself and hate my situation.  To wish it was different.

Then on to the internet for some light reading.  Is there any new information I've missed?  Of course not.  But, I did run across this:

"Researchers studying the effects of arthritis and scleroderma have found that some patients with scleroderma eventually develop rheumatoid arthritis. In fact, arthritis is often noted as a symptom of scleroderma. Both conditions may seriously affect the quality of one’s life as daily activities, such as cooking, eating and dressing become painfully difficult to accomplish.

When arthritis and scleroderma symptoms occur simultaneously, individuals often experience weakness in the thigh and upper arm muscles. Fatigue, tender joints and feverish joints may also be noted. In serious cases of scleroderma, difficulty swallowing and digestive problems can sometimes be present, as well as kidney failure, an irregular heart beat and severe breathing difficulties due to lung fibrosis."

Can anyone tell me something I'm not already living?


Now, hubby has put Kathleen Madigan on ...she always makes me laugh!


Tomorrow's another day.  A better day.

TODAY Show

Dr. Wigley is my super duper special rheumy ...

Visit msnbc.com for breaking news, world news, and news about the economy

These ulcers!  Frickin' frackin' ulcers.

It will always amaze me that such little "things" can be such .... can be so painful.  So debilitating.  The pain throbs.  Radiates.  Sometimes making them extra warm helps.  Sometimes rubbing the area surrounding them helps.  Sometimes band-aids help.  Sometimes the gel protectors help.  Sometimes, nothing helps.  NOTHING.

I have no idea if it's the ulcers or what, but I was out before midnight last night and didn't wake up until after 10.  It's now after noon.  I showered and fought with the towel and getting dressed and I still feel like I could go back to bed and nap on and off all day.

Thank goodness I have such a great hubby.  He tackled the mound of dishes that had accumulated on the counter.  That would have been a fiasco, I can already tell.  So thankful he spared me the pain and agony.

The gloomy weather doesn't help.  When it's sunny and nice, it's much easier to push past the annoyances and get moving to make sure not miss doing anything fun.  

In spite of the fact that I'd prefer to climb back in bed, I need to make cupcakes in a bit.  Dinner at a friend's house and we're bringing dessert.  Luckily cupcakes are easy.  My stand mixer can do all the work.

Besides, making sure to not miss the fun stuff makes dealing with crap much easier.

Time to suck it up and drive on.

Bouncing Back

The past few weeks have had more aches and pains and ulcered fingers than I've had in 8 months.  The weather here has been unseasonably cold.  Agitating those deep arthritis aches.

The aches and inability to move well have kept me home a couple of times.  In my pjs, on the sofa, with the electric blanket, meds, and lots of green tea.  I've skipped a couple of yoga classes.  Canceled a riding therapy session.

Earlier this week I made a whirlwind trip to the frigid "north county" where my family resides.  I left Tampa on Monday at 6 p.m., had a long, cold (-10 degrees) layover in Detroit, and finally arrived in Elmira, NY at 3 a.m. on Tuesday.  Took care of some family business and was back on a southbound plane Wednesday afternoon.

I knew when I arrived home that I'd be down for at least a day.  Yesterday, when I woke, everything hurt.  I couldn't raise my arms at all.  No yoga, and another day on the sofa.

Today, I feel much better.  Still achey, but mobile.  I made it to riding therapy.  I didn't do any reigning today because my hands are super sore and sensitive.  Everything else went well.

I feel like I've had a lot of aches and down days the past two weeks.  I also realize I'm able to bounce back much more quickly than before.

As quickly as the weather has gone from the 40s back to the high 70s, I too have recovered quickly.  Bounced back fast.

Something more to be thankful for!

Aches and Pains

I'm noticing a deep ache in my hips tonight.  It's one I haven't felt in awhile.  Not like the morning stiffness and ache I get everyday until I'm up and moving.  This one is the deep one.  The one that might call for some meds and definitely a hot bath or the heating pad.  Maybe both.  Not at the same time, though.  ;-)

This feeling takes me back to a time when that's ALL I felt.  Every day.  24/7.

I'm thankful THAT time has passed.

Of course, anytime an old feeling like that reappears, it sends an instant, but brief, panicky feeling.  One that immediately initiates a few arrhythmia patterns.  Then I remind myself that:
a) I took yoga yesterday after being away for 9 days
b) I've been on my feet all day
c) The weather is REALLY cold right now.

All likely a good combination to irritate these hips.  Nothing to worry about.  Unless it lasts longer than a couple of days.

Hopefully it won't.  I doubt that it will.

Little Reminders

Not that there's ever an opportunity to forget that I have Sclero, there are always daily reminders. But, those reminders are just that - daily and are what they are.

The other reminders are usually painful and, well, an added pain the ass.

Let's do an inventory.

Three finger sores. One on my right index finger that is on the spot I use to do everything. It requires a bandage.
One elbow sore.
One calcium deposit (I think) on my forearm.
One "thing" in the ball of left foot.
One right lung rub.

Some reminders have disappeared! The white blotches on my face and wrists are gone. So that's a plus.

Reminders or aches and pains aside, I'm still doing tons better!

Six years ago today I was spending some time under the care and hospitality of the Hopkins Kimmel Cancer Center, going through my 3rd dose of chemo. Scared of what was to come. Scared of what might not come. Hopeful for some added time.

Then, I told myself that if the chemo got me even just 5 more years, I'd be happy with that.

Let's just say, today, I'm ecstatic!

Not as much of a fan

Yesterday was better than today.

I went for my super special cleaning this morning.  They use topical numbing agent because they get way down in your gums and such.  Well, he didn't use enough or get it in all the right places.  Some spots were a little painful as he was digging around!

I was told to start using a battery operated toothbrush to do a better job.  I have prescription mouth rinse to use and have to go back in 6 weeks.

The visit was nearly as bad as it could have been, but I'm still not such a fan!

No, I can't open any wider!

Yep, I went to the dentist today.

I loved my MD dentist.  She had taken care of my teeth since I got out of the military.  Before sclero.  so, she had been through all the changes and she was great!  Visits were never easy.  We always had to figure out ways to get x-rays and fit the dental tools in there.  sometimes, we'd fail and I'd end up with sores in the corners of my mouth from stretching it open.  She was great, none the less.

I was apprehensive about going to a new dentist.  Always scared that they'll never have worked with sclero patients before.  That they won't be patient or understanding or have a good "chair-side manner."

Fortunately, everyone at my new dentist's office was great.  The x-ray technician worked really hard to get the few x-rays she could.  There's no way the adult things would fit in my mouth.  She tried with the kids tools and even those were too big.  So, she improvised.  She didn't get the full set they usually do, but she got enough to make the dentist happy.  He said we'll worry about more detailed ones as we go, if we need them.

The dentist was easy on me.  He did say "you can't open any wider?"  Just once.  LOL.

I have been bad and haven't been to the dentist in about a year.  I just need a really good cleaning to get started and then we'll be on schedule for regular 6 month visits.

Whew!  That was much easier than I expected.

And I'm ok with that!

Choosing the right OB/GYN

We all know how much women LOVE going to see the OB/GYN.  I think it must be ranked right up there with root canals on our list of "fun things to do."

Choosing one of these doctor's is just as fun!  You always want a doctor to be someone you like.  They are after all taking care of your health and well-being.  You want someone makes you feel comfortable.  Someone you trust.  Someone who knows what they're doing.

Definitely the case when you're picking someone to "get all up in your lady business"

After the military, I was lucky to find a gyn that was great.  I loved her.  I was a little sad to "let her go."  She didn't do anything wrong.  She was great.  However, after I was diagnosed, she and I decided that I should probably transfer to the gyn that "the man" had suggested, as she has worked with other Sclero patients and would best be able to work with me from then on out.

My new gyn was great!  She rocked.  I loved her too.  She was young, but knowledgeable of Sclero and VERY helpful.  Had great suggestions for issues and how to deal with things.  She referred us to the good doc who we worked with for IVF.

Now, the issue is, I'm a bit behind on getting my exam and she was booked up last time I was in MD for appointments.  Do I wait and try to get in with her when I go back in May for appointments or do I try to find a new gyn here in FL?  Do I want someone young or someone who's older with more experience?

I'm thinking I might just push the appointment off for a little bit and try to get in with her when I go in May.  Might just be the easiest route.

Spoke Too Soon

I have an ulcer on my index finger.  A very painful and annoying ulcer.

I also have one on the knuckle of my left ring finger.  I'm trying to ignore that one in the hopes that it will dissolve and disappear without turning into an oozing bandage needing pain in the...

The one on my index finger makes me mad.  First of all, it hurts VERY bad.  Second of all, it's right in the spot of my finger that I use to do EVERYTHING.  Mostly it makes me mad because I caused it.  Not on purpose of course.  I didn't know I was causing it.  But now I know I did.

Any prolonger pressure or rubbing on my fingertips and knuckles can cause these lovely little gems.  I didn't take this into account when I was making bracelets.  I was happy because I found some forceps that I can use to handle the beads.  I made some bracelets, then noticed holding the forceps was causing some indentations on my thumb and index finger.  So, I added some of the rubber grippy things and that seemed to help.  I must not have done it soon enough.

Yesterday that spot on my finger was sore.  Today, there's full-blown ulcered skin there.  UGH!  The question is, How long will it last?  Will it be quick?  Will it dissipate on it's own?  Will I be stuck with bandages again?  All, right before I'm planning to make a nice Thanksgiving feast this weekend and right before we head off on vacation.

Funny how one little thing can ruin my whole day!  I have dishes, laundry, and cat boxes to do ... and I can already foresee a day filled with bitching, a melt-down or two and maybe some yelling at inanimate objects.

FUN!

Just a little status update

No major changes that I can think of on the Scleroderma front.

I'm still bandage free - for three months in a row now!  THAT is a happy thought.

All of my sores have healed without incident.  There was one on a knuckle I was worried about when it first "surfaced" but it came and went with no big, deep, scabs or pussy crap or anything.

It's been cooler here lately so, I have to watch out for Raynaud's more.  We spent last weekend at Disney & Epcot and I had to wear my winter jacket and mittens the entire time.  I didn't have any issues though.  Just did my best to stay ahead of things and stay warm.

Yoga and riding have both gotten more intense and become great therapy and workouts.  I'm seeing actual physical results.

If I forget a day of Prednisone, I certainly know it by the next day.  My joints really do hurt and ache.  As long as I remember, things seem to go ok.

The only complaint I have right now is likely the complaint I'll have forever - these crappy-ass hands!  They suck, but I'm dealing.  With the advent of no ulcers on my knuckles, my hands are really becoming more manageable.  They still suck.  I'm still slow.  I still drop EVERYTHING.  They are still sensitive.  But, I'm adapting.  I'm learning.  I'm finding tools to help.

So, as long as I stay out of the a/c or the temps below 75, remember my prednisone, and keep on getting my exercise, things seem to stay pretty smooth.

Whew!

MORE BLOG CHANGES

In addition to an easy location for the JHU Scleroderma Center's Newsletters, I've also added a "live chat." I will try to host a monthly live chat session for any Sclero patients, friends, or families that would like to participate.

Check back soon - I'll post the date and time of the first chat in just a few days.

BLOG CHANGES

Please check out the new section to the right - "JHU Scleroderma Center Newsletters"

The Scleroderma Center has released their first newsletter and a copy can be found in this new section of the blog.

Uh-oh ... Raynaud's

Well, Raynaud's nights have hit the Tampa area.  The weather cools down quite a bit at night now. 

I found out just how much after leaving a Sugarland concert tonight.

I wore jeans, flip-flops, and a short sleeved shirt.  Forgot my sweatshirt.  Forgot my mittens.  I remembered them all summer when we went to indoor events.  All summer I remembered that the a/c is a sure-fire way to kick off an episode.  That's a part of the reason I don't work right now.  The cool office temps and/or a/c are not my friends.

When we left for the concert it was in the 80s.  BEAUTIFUL weather.  I did think to grab my Snuggie out of the car when we got to the concert.  Just in case.  I ended up using it, too.  By the time we left the concert, it was 63.  By the time we got to the car, my hands, toes, and 1/2 way up my fore-arms were cold.  Not color changing cold, but right on the border.  A few more minutes and they would have been purple.

So, I guess now I need to start remembering to pack an extra change of clothes whenever we leave the house.

Oh, and I guess I have to go buy shoes.  Sneakers don't go with everything.

I'm o.k. with ALL that!

Appointments went fan-tab-u-lously.  Yep, that's a word.  It's my word.

Cardiologist appointment was great.  EKG showed none of the irregular beats I was having just a year ago.  Thank goodness!  Apparently the new lifestyle really IS awesome!  So, now we're just in the monitoring mode for the heart.  I go back in 6 months for an echo and another EKG and to chat with the good doc!

Rheumatology went just as well.  I feel the best I've felt in 8 years.  We're staying the course with medications, as they keep the aches and pains and possible flares at bay.  I've missed a prednisone and the aches and pains are very present by the next day when that happens.  So, we've decided to keep it in the routine.  Immune-suppressing meds get to stay in the cocktail too. Doc says we don't want to get overexcited, remove the med, and let the Sclero creep back in.  I'm o.k with that.

PFT results are holding steady.  The results show the past damage that we'll always see, but the function isn't decreasing more than it already has.  I'm o.k. with that too!

We discussed the lung rub and how it creeps up after a long day, over exsertion, PFTs, etc.  This is to be expected.  It will likely always be there.  Just another reminder of the damage that's been done.  As long as it's tolerable and I know how to deal with it, we're good.  As long as it doesn't start causing crippling pain again .... I'll be o.k. with that too!  If it does, I know who to call!

Then there's my crappy-ass hands.  They don't do a lot of the things they used to do.  They slow me down a lot.  But, they still let me do the things I need to.  They won't ever get better.  They'll never be straight again, but if I keep moving them, maybe they won't get worse.  That would be nice.  So, I'll keep on moving on.

If the doctor had to "predict the future" he sees a "long and happy life ahead with a 90% chance of no major flare ups."  As sick as I've been since the beginning and his experience with the disease, hopefully, we're over the biggest hurdle and things will be mellow now.

Is that a guarantee?  Nope.  Do I hang all of my hopes and dreams on that?  Nope.  Do I trust my body?  Absolutely not!  I do, however, know that I feel good today.  So, we'll plan for tomorrow, but live for today!

And, yep, you guessed it, I'm o.k. with that!

6 month follow up?

Tomorrow I am Baltimore bound for a day of appointments on Friday.

I see the cardiologist in the morning, the rheumatologist in the early afternoon and get a PFT somewhere in there as well.

The rheumatologist said that if all my tests come back looking good at this appointment, I don't have to come back for 6 months! 

6 months?  Can this be?  Say it ain't so?!  I won't know what to with myself!  Wait, I'll figure it out!

I don't believe I've gone for 6 months without seeing the rheumatologist ... in .... at least 6 years, probably closer to 7.  Maybe, even 8.

I love him, he's a great guy, but 6 months?!  Yippee!!!

Maybe he can fix my hands while I'm there, too!  HAHAHAHAHA!  I'm a funny one!  I'll stick with 6 month appointments and be super-duper-frickin' happy with that.

Yes, I will!

Rough night

Reflux again last night.  This one was my own fault.  I knew better.  I had a bowl of cheerios at 11 p.m. and took my meds with soda last night.  What was I thinking.  Sometimes, I really am brain-dead!

The reflux wasn't as bad as in the past.  I'm learning how to respond to it a little better, rather than freaking out and choking and hacking.

Then, I woke at about 5 in some major joint and back pain.  I was a little worried that I was having some spontaneous overnight flare up.  I even thought that I should go look out the window and see if we were having some "nor'easter" storm or something.  Then I realized I was cold.  Freezing.  Hubby got me another blanket.  I was still cold.  He got me the heating pad.  That helped and I finally fell back to sleep after 7.

And when I woke up for the day, I feel ok.

What the heck was that all about?

Reflux Sux!

I hate being awakened in the middle of the night when I'm sleeping so soundly, by choking on reflux.  YUCK!

It doesn't happen often, as the Ambien usually keeps it at bay.  However, last night was quite a doozie.  My subconscious woke me up before I actually started choking.  I was somehow able to get my senses about me to not freak out and start gasping and choking and got myself in a vertical position to allow gravity to work it's magic.  Gravity works slowly with reflux.

Then, some of the acid hangs around in the back of the throat, burning and tasting disgusting and making me cough.  Again - YUCK! 

So, in the process of coughing and hacking to get the nasty crap out, my lung hurts today from all the extra activity and my throat hurts a little too.   I discovered a little bit of Robitussin helped the whole process!  It seemed to cling onto any remaining crap left hanging around and calmed the coughing.  Guess I shoulda tried that years ago!  Something definitely to keep in mind for next time!

The reflux spell kept me up until about 5 and then Lily thought that I needed to be awake to play kitten games at 10.

It's going to be a long day!

Still Rockin' and Rollin'

Things are still moving along well.

No bandages and only that one elbow ulcer for 2-3 weeks now.  I'm mighty happy with that!

Noticing my shoulders are achey in the mornings again.  The same as it used to be.  Right now just mildly annoying.  It gets better as I get up, get moving and get the day started.  Hopefully it stays mild!

My sleep is still off.  I'm sleeping soundly for 8-10 hours without the Ambien.  Just falling asleep late and getting up REALLY late.  Hubby is working 2p-10p so, that probably is part of it.  Last night, I slept hard though!  10+ hours of sleep with only one 15 minute interruption.  I woke up with a headache that turned into a migraine as the day went on.  Seems to be easing up now though.

And what the heck is with this acne?  It's clearing up finally, but still!  Not good for an OCD "picker!"

Other than that, all seems to be good.  Gearing up for my trip north to visit the cardiologist, the rheumatologist, the lung tester person, and then my family for about a week.  It's gonna be cold there.  No shorts, tank tops, and flip-flops for me.  I haven't worn "real shoes" in 6 months!  Can my feet handle it?  I guess they'll have to or I'll be a walking Raynaud's episode and we don't want that!

Keeping things in perspective

I'm an intolerant patient.  Not intolerant with my doctors or medical staff members.

I'm learning that I'm intolerant with other Scleroderma patients.  I feel really bad about this too.  I feel like I should be more tolerant, but I am just not.

I have problems tolerating other patients that act like their world is ending.  Like they are the only ones to ever go through this.  Like this is the worst thing that could ever happen to them.  Like their doctors should be solving all of THEIR problems and that its the doctors fault when things flare up or can't be controlled.  

It's not that I don't sympathize and empathize with them.  I do.  I definitely do.  This disease sucks.  Life with it can suck.  Yes, some part of every day leaves me angry, sad, scared, or any of a plethora of emotions.  So, I completely understand patients feeling that way.

I just don't like it when they can't move past that.  When they wallow.  When they let it take over their lives.  Use those emotions to do something.  There ARE ways to make your life better.  YOU can take control of that.  So, DO something about it.

And don't make this 100% of your life.  Need to vent?  Feel free to do so.  But, find the right forum.  Don't tell every person you meet all of your woes.  About every ache and pain you have.  Do you want other people to do that to you?  I'm not saying to hide what you have.  Please, spread the word.  Raise awareness.  Just be mindful of others when you do it.

And, least of all, remember, no matter how bad you feel, how bad your day is ... someone, somewhere is having a worse day than you.  Be happy that you know what you have and you're getting treatment for it.  There are people that are still struggling with getting a diagnosis and aren't getting any treatment.

Remember you could be sleeping in a foxhole in a desert somewhere.  You could be living in a hut in Africa with no medical care what so ever.

In spite of Scleroderma, life really IS good.

Lookin' good

Lab results "continue to look very good."

Is this 4 or 5 months now?  Who cares, really?  SO happy to hear.  Such a relief and a load off my mind.

Here's to hoping it continues!

A little behind

I was just chatting with a friend on FB about this blog and realized I'm a tad behind on my updates.

I came back from our Toronto trip in August, with a cold.  While on vacation there, I had to wear pants and use my Snuggie from time to time.  Yep, it was August and LoJo had to bundle up.  The temps are a little cooler up there and then there's the inevitable a/c.  You know it, anything under 75 degrees and I'm getting a Raynaud's episode.  I did pretty good though and managed to keep most of the episodes at bay.  Like I said, I did come back with a cold though.  Nothing major.  I fought it off with no medications.  I had one day where my lung was irritated from the sneezing and such, but it all cleared up on it's own.

I have one sore on my elbow and one on my right index finger.  The others have healed and I'm currently not wearing any bandages.  Knock on wood.  Hopefully I didn't just jinx myself.

My feet are mostly doing better.  I have a sore or something on my heel.  It started a few weeks ago and I can't quite figure out what it is.  I'm just keeping an eye on it for now.

Still sleeping without Ambien and loving it!  It's one less pill in the cocktail and one less expense.

Monthly blood tests were last week.  I'm hoping for "normal" again.

We went on our first cruise this past weekend.  It was awesome.  Good concerts on the ship, got to hold some sea turtles in Grand Cayman, and just all around had a good time.  I believe I was the only person the ship to sleep in fuzzy socks, contemplate wearing my mittens (yes, I packed them) for my frozen drinks, and wear a jacket during the indoor concerts.  Again, gotta love the temps below 75 degrees.  *grumble grumble grumble*

I feel some purple fingers and toes coming on as the nighttime a/c has kicked on (I like it cold to sleep) so I need to go climb under the covers to keep them warm and pink.

G'night!

The dreaded grooming process

Every woman has grooming things she hates doing.  For some it's shaving.  For some it's plucking the eyebrows. Others hate doing their hair or make-up.  It can be any list of things. 

Since I've had Scleroderma, they've all turned into a pain in the @$$. 

First it was my hair.  Originally i shaved it all for the chemo, but doing so made me realize, I can't run curling irons and hair ties and do french twists or cute little up-dos anymore.  So, I came to the realization, I will never have long hair again.  Heck, some days, even with it this short, I'd still opt for shaving it all off again!  LOL!

Showering, shaving, lotion, etc. are all a pain in the butt.  My razor is on a stick so I can shave my legs and not have to ask hubby to do it. 

I've learned to shampoo my hair with the backs of my thumbs and wrists.

If I do lotion on my own, it's only on my arms and upper legs as I've figured out how to do it with the backs of my hands, too.

I have yet to figure out how to do my toes.  The hubby either does them, or I treat myself to a pedi.  So, that works out.

Now, here's the most despised and hated part of the grooming process for me.  My gosh-darned finger nails. 

I have nice, hard, thick fingernails.  When my hands were straight, I could grow nice nails.  I was the envi of any woman that had to pay for acrylic nails.

Now, the "positive" of Scleroderma, is that it makes those nails that much harder.  The not-so positive about that is that they are so hard, I often times can't clip them with clippers.  Seriously.  Add to that my curled, gnarled hands and the fact that it's almost impossible to maneuver fingernail clippers to actually even try to cut the nails.  So, I end up having to file them down.  Yep, file, file, file.  Ugh!

I'd love to get a mani, but that's just not happening.   So, I often put the task off much longer than I should.  I try to keep on top of it, otherwise I scratch myself and we know I don't need any more sores.

So, tonight, I know that my nails are too long.  They have been for too long for over a week.  I've gotten the emery board out a ton of times, just haven't made the time to do it.  It's a long laborious process.  I even bought emery boards on vacation.  They're still in the package in my bathroom travel bag.

I guess tomorrow I'll have to break down and file the darned things down.   Maybe I'll get the energy to paint them too.  They might not be pretty hands and the paint job will be far from perfect, but if I'm gonna cut 45 minutes out just to file them down, I might as well add the extra time to make them girly.

Sleepin' tight

without Ambien!

I've been a slave to Ambien for about 6 years now. 

Right after chemo, I started not sleeping.  I was up all hours of the night, contemplating the meaning of life.  Stressing because it was ___ o'clock in the morning and I had to get up in ____ hours for work.  Sometimes, this would turn into full blown melt downs.  Crying and sobbing the bathroom because I was tired.  I knew I needed to sleep.  I knew I'd be exhausted for work.  I knew I'd finally fall asleep just minutes before the alarm went off.

When I started Ambien, it helped a lot.  The problem was, sometimes it wouldn't kick in for a little bit.  Then I was out cold for at least 8 hours.  Maybe more.  There was no waking me.  The house could have burned down.  Someone could have broken in and robbed us blind.  I'd have slept through it.

Regardless, being able to sleep was far more important to me, so Ambien became my savior.  Without it, I didn't sleep.  I'd seriously be up all night long.

Recently, I've discovered I was doing things online via my phone, in my Ambien sleep.  I wouldn't get out of bed and go anywhere, I just posted Facebook messages, or sent emails and didn't remember doing it the next day.

This bothered me a bit.  So, I wanted to stop taking it.  I want to be a normal person, who sleeps at night, without taking medication.

I was going to stop cold turkey, but at the urging of a friend, I decided to wait until I discussed it with my doctor first.  Just in case there might be any side effects.

I went to my July checkup and totally forgot to ask.  So, I was going to wait until I go back in October.  Then, due to insurance issues when I tried to get it refilled, I decided, this was as goo a time as any.  When the pharmacy said it was going to cost $53 dollars for less than a weeks worth of pills to get me through our out of town trip, I said, this is it.  I'm done.  It's not first time I've had insurance and pharmacy issues for this medication.

I'm tired of the struggle.  I'm tired of the cost.  I'm tired of depending on another med to sleep.  I emailed the doc to confirm it was ok.  He said, I could stop and take it as needed.  So, it has been 1 week and 2 days that I have slept without Ambien.  I saved the last few pills I had, just in case I have a rough night, but, so far, so good!

Still normal

3 months running and the blood tests are still normal! Can I get a woo and a hoo, please? VERY exciting news.

It also seems odd to me. "Normal". The chemical results may read normal, but the physical components are anything but normal. The bending and the flexing of the major joints are working towards it. The yoga is really helping. The heat is helping.

The hands are far from normal. The crooked, curled fingers. The ulcered knuckles. The painful, scaly, peeling finger tips. The blue or purple lurking under the surface waiting for a Raynaud's episode if the temperature drops just a degree or two.

The issues you can't see. The lung issues. The funky heart thing.

Normal. Hmmmm, I guess its all relative, right? Even if the definition is skewed, its still a good thing to hear!

Woohoo!

The Look

Do you know the look?  I hate the look.  The look of "oh, you poor thing" or "how sad" or "what's going to happen to you?"

People don't mean anything by it.  But I hate it.  I'm sure I give too.  I still hate it.  It's the look people give when they here about my circumstances.  When they hear that I have Scleroderma, and they actually know what it is.  What it can do.

Again, I know they are trying to be understanding.  Show that they "care."  But, I hate it.  It's a reminder of the crappy side of my life.  The side that I know is there, that I deal with every day, but try to allow (like I have some amount of control over it) to only be a small part of my life.  The look reminds me that it can be more.  That it can be all of the things I'm scared to death of.  The things one hopes will never happen.

Today was blood work day.  Yes, it's the happening event every month.  :-D  The lab here is awesome.  Unfortunately, today, my one teeny tiny vein decided to be uncooperative.  Maybe it's had too much.  It's tired of bearing the burden.  It has been faithful for a couple years now.

My technician was clearly upset by this.  We looked for a vein in the other arm.  I showed her where the original good one was located and told her if she thought she could get into it, I'd let her try.  She found it.  Buried deep down under there.  One stick and a little bit of wiggle and it bled like crazy!

She's awesome.  Good at her job.  Great personality.  She just puts me at ease.  I think maybe next month I'll bring her a thank you.

Elvis has left the building

I've developed a new muscle spasm thing that is kind of bugging me.  It's in my face.  My mouth to be specific.

I use straws for all of my drinks.  It's a convenience thing.  Because of my mouth having the smaller opening, my hands and arms being funky, and the "clutziness" that goes with it, using a straw is just much safer all the way around.

It, of course, has it's draw-backs.  The main one being that, now I have lines around my mouth.   With that, lately, when I'm done drinking, my lips spasm into an Elvis face.  It's really kind of funny!  It seems very pronounced and way more exaggerated than it actually is.  When I tell the hubby it's happening, he can't really seem to notice.  To me, it feels like my face is all contorted out of shape and that I'm being an Elvis impersonator.

Maybe I should start my own show!

Evolution and endurance

I've been sleeping a lot again.  No afternoon naps, but sleeping at least 10 hours  a night. 

I'm not a fan of the 10 hour snoozes.  I never have been.  It used to be the cause of many a meltdown.  Not being able to get up for work in the morning.  Feeling like I was being lazy.  Like I should be able to fight it.  Like I was being a slacker and not doing my job.  Then needing more sleep and a nap in the middle of the day.  Ugh.

But, when you just can't fight through the tired and the sleep, what do you do?

I had a good team when I was still at work in Maryland.  They understood why I didn't make it in until 10 or 11.  Well, maybe they didn't understand, but lucky for me, they accepted it.  Worked with me.  Knew I could handle whatever needed to be done after I got in. 

Since the move and the medical leave, the 10 hour snoozes don't cause these meltdowns anymore.  I still feel like a shlump for sleeping so much, but I don't beat myself up.  I know that what I have to manage at home will work on my schedule. 

When I think about being tired, I remember, I've been tired my whole life.  As a kid, I never was up at the crack of dawn for Xmas.  I couldn't drag myself out of bed that early.

At 19, my thyroid made me sleep all the time.  After that settled, I was a normal sleeper for a couple years.  Then, along came Scleroderma.  Since that started, I think there is rarely a period when I'm not tired.

I've commented MANY times over the past 14 years, that I'm tired of being tired.

Almost a blessing in disguise that hubby and I weren't blessed with little ones ... I'm not sure I could handle being any more tired.

The past few mornings I've been noticing some stiffness and aches when I wake up.  Nothing too alarming.  Just enough to notice.  To not help with the motivation, or lack there of.

I'm also noticing that a set of stemmed glasses we bought a few months ago, just for me, now seem to be a hassle.  They weren't when we got them.  Now they are.  Just another indicator that my hands continue to get worse.  Good thing they were cheap.  Looks like I'll be scouring Walmart again for some new ones that work.

Always looking for ways to adapt.  Evolve.  Endure.

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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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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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!

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!

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!

Whew!

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!

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.

Oops

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.

Here's to hoping

Tomorrow is the first Thursday of the month.  Blood work day.

Here's to hoping that we have more good test results this month.

Then we see the rheumy on the 19th.  Mostly good stuff to pass on to him, for once!

On a more "positive" note

We went out for dinner tonight and I ordered a margarita.  The waitress carded me.  This isn't an odd occurrence.  I get carded from time to time.  What was funny was the way she carded me.  She almost seemed there was no possible way she thought I was 21.  Uh, yeah ... try 12 years ago!  LOL!

2 weeks ago when I did my volunteer orientation at the animal shelter, I was talking with another volunteer.  We were talking about another organization that I want to volunteer with that works with the court system.  She said to me, "Are you OLD enough to do that?" 

The "positive" side effect of having Scleroderma is the youthful glow it gives my skin.  Yes, we'll cal kit that.  A "youthful glow" 

It cracks me up to think what some women pay to have collogen pumped into their lips, foreheads, etc. so they can look younger.  Have that youthful glow.

My body does it for free!

(Yes, please remember, I ooze sarcasm!)

I woke up today feeling a little stiff and achey.  I'm sure it's from the travel and lack of activity while on the road.  Granted, I was busy running here and there and visiting family, the time really was spent being sedentary.  No exercise.  No yoga.  Can 2 weeks really make a difference?  I'd like to say no, but I'm afraid my body is telling me different.

I am noticing that no matter how much I don't want to admit it, my middle finger on my right hand continues to curl inward.  Nothing I can do about it.  I stretch it and pull it to it's limit throughout every day, but the tightening is winning.  Another digit, soon to be rendered all but useless.  More modifications to be made and adaptations learned.  After last year's easy left finger amputation, that seems like such an easy solution.  I'm not using it.  Cut it off.  I can't do that though.  If I keep following that plan of attack, I'll surely have no fingers left at all!

Wouldn't THAT be an adjustment?!

Such is life!  It's just a finger.  I'll learn to adapt with it the way it is, without cutting it off.  It could be much worse!

Traveling woman

I'm currently headed home after a week in PA for a wedding and then visiting family. 

I managed 1/2 of the trip without the hubby and am happy to report, it has gone well. I'm not beat down and exhausted. I still feel really good. 

My hand sores are the only issue. They are healing, slowly. They just make things harder and are painful, but manageable. I do miss not being to yoga for over a week. I can "feel" the need to go back and get some PT and stretching back. Glad I've got 2 classes on the schedule for next week. 

I had a couple of Raynauds episodes while in the cooler weather, but nothing some fuzzy socks and a blanket didn't fix. 

I can also see the difference in my skin. It has gotten drier as the week has progressed. I think my body really loves the humidity and added moisture in the FL air!

BOO-YAH

Another good week.

No new Sclero issues to note. 

Finger sores are still healing.  Evening "cankles" are still appearing.  The lung rub hasn't been noticeable in days.

Yoga kicked my butt today!  My inner thighs and butt muscles are yelling at me tonight.  In a good way! In the way that says, "hey, you're breathing some life back into me!"

I got some awesome stretching in and I am finding that my body is slowly becoming more flexible.  Slowly, but surely. 

Each week I notice that different things are becoming easier.

Over the past few weeks I've noticed that, though still difficult, picking some things up off the floor is easier.  Flat things like paper or cards are still impossible because of my fingers.  Other things like clothes, dropped silverware, bottle caps, etc. are getting easier.  I didn't say easy.  I said easier.

Today, I put socks on alone.  In public.  Without my "sock assist."  I didn't look like I was trying do some circus trick and I wasn't a sweaty, tired, crying mess afterward.  I have not put a sock on my own foot without using the "sock assist" in years.  I honestly don't remember the last time I was able to put a sock on "normally."

IN YOUR FACE, SCLERODERMA!  You and your muscle and tendon tightening got nothing on me today!  BOO-YAH!

"Very good"

Just got lab results back from the doctor...

"Labs look very good with CPK only 175 (normal 24-174)…lets continue on current therapy."

That is not a phrase or a CPK number I have seen in .... honestly, I don't know how long!

Let's just say, we're having a happy day at LoJo's house!

"Cankles"

I forgot that the heat and humidity bring on the joys of puffy feet and ankles!  By bed time each evening my feet and ankles feel like they might just pop.  The "cankles" have started to kick in!  For those that ask what "cankles" are ... it's where your ankles disappear.  Your calves and ankles have miraculously joined together as one ... into a "cankle."

Oh, the joys of summer.  These are not an intolerable occurrence.  Just another annoyance.  This one make any shoes look like I'm trying to be the step-sisters on Cinderella, shoving my big fat feet into that tiny glass slipper.  


Other than that, it's been another good week. 


Less noticeable lung disturbances.


Same annoying, painful ulcers on my fingers.  The one on my arm is almost completely healed.


I think I'm getting more flexibility from doing the yoga.  Not to mention the overall workout it's giving my body.  Mind and soul, too.


Blood work was on Thursday.  We'll see what the results are tomorrow.

 

Digital ulcers are NOT my friend!

The past week has been another pretty quiet one.  No large joint aches or pains to speak of. 

My right lung seems "irritated" at the end of every day.  It's nothing that feels major to me.  It doesn't hurt.  Just makes me feel winded.  Let's me know it's there and something is going on.  A good night's rest calms it down and it goes away until I get tired again.  Sometimes it pops up after a yoga session.  Something I expect, as I am working my body and my breathing.  Some days a day out make it more noticeable.  Again, all to be expected.  And easy for me to manage.  Just stop and "take a breather."  (Pun intended!!)

My feet are bothering me more lately.  The balls of my feet hurt.  I've had this "foot thing" in the ball of my left foot for a few years now.  It comes and goes.  It flares up if I wear the wrong shoes or have been on my feet too long.  I've learned not to wear any sort of heel for very long.  I can get away with a couple cute pairs of really squishy heeled sandals that I own ... but only for a couple of hours.  Any longer than that and I'll be in major pain.  I have them in black and white.  Needless to say, my shoe collection is TINY.  Less than 10 pair total for this chicky.  That's not say I haven't spent a fortune on shoes.  Trying to find some that don't hurt.  I try them on in the store.  Walk around in them.  Jump.  Run.  They seem good.  Then, by the time I finish wearing them for the first time, I want to cut my feet off and beat someone with them.  So, to Good Will they go!  UGH!!!  So, anyway, the foot thing is getting annoying.  Just one more thing to have the doc check out when I visit next month.

My knuckles hurt at some point everyday.  That's nothing new.  With my hands curled the way they are, there's just going to be some pain.  It's all so mild though that I'm not sure I really notice it anymore unless I think about it.  Now, let me bonk a knuckle on something and that will make me yell.  Usually colorful language too.  :-( 

So, last, but certainly not least ... the digital ulcers.  #$%&##^%!!!  I had one on my pinky and one on my middle finger that have both been there for quite some time.  A couple months, maybe.  I finally got them all healed up and BAM, there's one on the other pinky!  Now one on my left index finger.  AND ... I just noticed a few hours ago, ANOTHER one on my middle finger.  Right below the one that just healed.  UGH!  These are the worst.  They come from the knuckle being rubbed against things when I'm using my hands.  I keep them covered with bandages, which seems to help the healing process and protects them a bit, but they still get bonked on everything and cause some major pain.

Aside from those, it really HAS been a quiet week, health-wise.  Just trying to keep on movin' on with the feet and fingers.  Overall, I feel good.  The weather is HOT, but feels so good to me.  As long as I'm not out in it too long!  Yoga is awesome and I think it's helping.  Riding therapy was great, but is on break for the summer, so I'll have to find something else to do.

Current status - up in the air

I think I've covered everything until the most recent flare.  Notice I said, think.  There has been so much, some things have gotten lost in the jumble.

Originally we had planned to move to CO after our son finished high school in 2011.  However, the Raynaud's and feeling crappier during the winter months derailed those plans.  We changed plans and decided to move to a warmer climate.  The south of France?  Spain?  Puerto Rico?  Florida?

Instead of waiting until 2011, we uprooted the family and moved up the timetable.  Real estate in FL turned out to be VERY affordable for us NOW and honestly, I didn't know if I could "survive" another winter in the north.  Winters had become excruciating and intolerable for me.  More Raynaud's lead to more ulcers.  The cold leads to more achey days.  Having to wear 20 layers, not be able to move and STILL be cold was dreadful.  By the end of winter I would end up being ulcer ridden, in pain, miserable and depressed.

So, we started the job and house search at the end of the summer 2009.  By Thanksgiving we had jobs worked out and by Christmas, we had put a contract on a house just outside of Tampa.

We made the move at the end of February.

During the winter I had begun to get some shoulder aches going on.   By the time the move rolled around I was barely able to lift my arms.  Then on the drive here I noticed skin changes on my legs.

The first few days I was here, I was exhausted, achey, and stayed in bed.

The doc and I decided that I should stay out of work for awhile and I started the short term disability process.

March was a roller coaster.  Some good days.  Some bad.  Seems like more bad than good.  Then I saw all my docs in April for my check ups. 

The cardiologist was good.  Nothing new.  Echos look the same.  Come back in 6 months.

Rheumatolgoist and Pulmonary tests not so good.  The rheumy can "see" the joint and skin issues I've noticed.  The pulmonary function has decreased.  A chest scan shows some new scarring in my right lung.  Blood tests show "activity."

Welcome to feeling like we're back to pre-chemo 2004.  Ugh!  But, I'm not letting it get me down.  The first couple of days after finding out results were kind of icky, but I'm forcing myself out of the slump.

We're trying new meds.  We won't know for awhile if they're working.  I get monthly blood work done to keep an eye on things.  The latest ones should some increased liver function, which may be an error.  We'll see with the next round of blood work.

After some chats with the doctor, I've added some yoga and horse riding therapy to my routine to serve as physical therapy.  I think they are helping.  The warm weather is helping.  I haven't noticed a serious Raynaud's episode in my hands since we moved.  I do get them in my feet when I don't wear slippers in the house, but I don't notice them there as much as if they were in my hands.  Now, I only get episodes in my hands when I go to the grocery store and forget my mittens.   

I have 2 knuckle ulcers caused by the knuckles rubbing on things like boxes and such during the unpacking process.  Thank goodness for Nexcare, again.  Still.

My lung seems to be rubbing a bit lately.  But, I suspect that's to be expected with the current lung issues.  It doesn't hurt.  I just know it's there.  It usually pops up at the end of the day or when I've "overdone" it.

Those have become part of my daily life now.  Like my curled, gnarled hands, they are things I consider annoyances that are part of being me.

Otherwise, my status is still up in the air until I see the doc in July.  We will look over all of the blood work, and probably have more pulmonary tests and CT scans.  That's when we'll see if there is still lung activity or if we've quieted that down again.

In the meantime, overall, I feel generally well.  For me.  Less achey.  More flexible.  More energetic.  More upbeat.  More positive.

Reflux issues and a lazy stomach

Somewhere in the mix of things, for whatever reason, my insurance decided that Nexium wasn't going to be covered anymore without first trying to see if the cheaper meds were successful.  We knew they wouldn't be, but you know how insurance is.

So, we tried all the cheaper brands.  Nothing was working.  My reflux increased.  I was up in the middle of the night choking on reflux.  Water would cause reflux.  Crackers caused reflux.  Breathing seemed to cause reflux.

Then my stomach seemed to stop working.  I would put food in, but the stomach muscle wasn't processing it out.  So, it would just sit there.  Breakfast would end up being my only meal of the day because I was full.  If I tried to eat later in the day, I would just end up getting sick.  I'd end up with more reflux issues or I'd just throw up whatever I ate.

I got sick a lot.  I hate getting sick.  I lost some more weight.  Like I had any to lose.

This went on for awhile while we went through the insurance process of trying different meds.  We tried changing me eating schedule.  We changed my diet.  We tried meds that empty the stomach.  The reflux continued.  We tried all of the cheaper reflux meds. 

Then, finally, we had gone through them all and were approved to try Nexium again.  Voila!  The reflux is gone, the stomach seems to be working again.  I can eat!  Yay! 

I still don't eat much.  My stomach appears to be tiny, but man, it's good to be able to eat and not have to worry about it all "coming back to haunt me."

Mmmmm, now I'm hungry for some lemoncello cake from our favorite Greek restaurant!  Too bad they don't deliver.

Arrhythmia

When I look back at clinical notes, an arrhythmia has been noted for quite some time.  Always mild and never a cause for concern.  A certain percentage of the "normal" population have an arrhythmia.  It doesn't cause an issue.  A lot of people don't even know they have it.

I don't usually notice my funky beats unless I'm stressed or concentrating on my heart rhythm.

When the increase became more pronounced, a little over a year ago, we decided that I would see the cardiologist every 6 months, versus every 12 months, just for monitoring.

I have a large number of PVCs.  Premature Ventricular Contractions.  Essentially, in between my normal heart rhythm, my heart beats extra times.  On average, the human heart beats roughly 115,000 times in 24 hours.  According to one set of test results, I have 28,000 PVCs in a 24 hour period.    No wonder I'm always tired!  LOL! 

The normal cardiologist consulted another "extra special" heart guy who ran some tests and noted that the electrical flow in my heart is disrupted.  It looked like some scar tissue on my heart was causing the normal elctrical flow to take different paths, causing the PVCs.  He noted that I "likely have some degree of Scleroderma heart disease.... but due to the rarity of the condition, there is very little data about the best evaluation and treatment ...."

Well, THAT'S comforting (yes, note the sarcasm).  Now I was starting to get a little freaked out.  Trying not to, but honestly, I was.

The new specialist decided that we need to do an electrophysiology study.  The plan was to sedate me, and insert some catheters into my lower right groin, feed them up through to my heart to where the issues were going on.  Then they would run some internal conduction tests, maybe even give it a shock or two while they were in there to see if we needed to make future plans to do anything "more invasive," like install a pacemaker or defibrillator.  

He also noted, that if necessary "given her extremely thin body habitus and skin changes, implantation of a pacemaker or defibrillator will not be a straight forward matter in her."  He's right.  I am just skin and bones ... where the heck would they put that thing?  Would I look like Iron Man with such a device in my chest?  Can I get one that glows like that?  That would make it more fun.

Ok, all joking aside, NOW I was super duper comforted.   (Tons of sarcasm, here)  So, we were sticking some things in my heart, running some tests and maybe later, we get to a put a device in there?  This is my heart we're talking about.  It's what keeps me going, now we're going to stick things in it?  Electrical things?

All of the other stuff I've been through didn't freak me out nearly as much as the prospect of this procedure. 

Recently any procedure involving an IV had become a fear for me.  Usually the intake nurses, bless their hearts, can't get an IV into my arm to save my life.  It becomes a nightmare, they end up sticking me a ton of times, sometimes having to resort to trying in my neck.  By the time they get an IV in me, I'm in tears, pain, and ready to skip whatever procedure I'm in for and the hubby is ready to kill someone because he can't stand seeing me be stuck anymore. 

Now, heap the fear of heart stuff on top of that and just imagine how much fun I was!  Woohoo!  I think by the time the procedure rolled around, hubby might have been ready to kill ME!  I was freaked.  I was annoying, I'm sure.  I actually considered canceling the procedure.

Fortunately, I didn't.  The intake nurse was AWESOME.  She was a sweet lady.  She stuck me on the first try.  I wanted to keep her for our very own.  The procedure went smoothly.  They decided that we don't need to implant a device and that we can continue to just monitor the heart stuff.  I can continue with my normal activities.  Just listen to my body and should I notice anything out of the ordinary, call the doc immediately.

Well, THAT, I can deal with!  One more "crisis" averted!

Finger Amputation

On July 1, 2009, I elected to have my left digital finger removed.

Yes, I say elected.  I made this choice.  No suggestions from any doctors or anyone else.  The finger was permanently fused in the bent angle.  Imagine, one finger always being like it's in a fist.  I hit that knuckle on everything.  It was always ulcerated.  Always sore.  Always in the way.  It made me cry, every single day.  I had started to use my middle finger in it's place.  It had become a useless, painful, annoyance.  It hindered a lot of my everyday activities.  

It essentially was fused in this position, but pulled up, sticking out above the rest of the fingers more.  All of my fingers are curled into a very similar position of the middle finger displayed here.  Just in a slightly more relaxed and functional position.

Yes, I could have had the finger straightened, like I had the pinky on my right hand, but I think it would still have been useless.

I consulted the rheumatologist.  Then scheduled a consult with my favorite hand surgeon.   Both were a little surprised that I was coming to them asking to have this done.  Apparently, most people are a little freaked out by such an idea.  Both doctors were VERY supportive and honestly, I think the hand surgeon was a little excited.  LOL!

The surgery went well.  He removed the index finger back into my hand so that it would look a little more "seemless."

This is a picture of my hand 2 weeks after the finger removal.  Just after having the stitches removed.  You can still see the swelling.  It's not "gorgeous" by any means, but it wasn't pretty before the surgery either!  This is much better and way more functional!

A view of my hand, today, 28 May 2010.  Almost 11 months after the finger removal.  As I've mentioned, my other fingers continue to curl, but my hand is still "mostly" functional.  My knuckles still are very sensitive and susceptible to being "bonked."  I use tools or have had to modify the way I do things.  Some things seem impossible, but I find a way to keep moving on or I've learned to ask for help when I need it.

This & That

Somewhere in all of this, post chemo and prior to now, I've had other "little" things pop onto the radar.  I can't recall dates for most of these.  They usually are quick little annoyances that last a week or two. Maybe a month.  Usually we can get them back under control and move on.  Some things just pop up here and there and don't need "tending" to.  They go away the next day or in a couple of days.  They are just reminders that my body continues to rebel.

Until the past few weeks, I've always been tired.  Exhausted.  At some part of everyday, I'm exhausted beyond belief.  Some days my body will just feel like it can't make another move and I have to rest.  I would have to plan my day around if and when I could get a nap in.  And we're not talking just little half hour cat naps.  I needed 2 hour naps.  It used to make me cry.  I would say, "I'm tired of being tired." Many a melt down has ensued because I've been trying to get through a day without taking a nap.  We've learned to not fight it.

I get tendon or friction rubs.  Where the tendons around my joints get tight and tired and they rub.  You can feel the vibration and sometimes hear a creaking sound.   I relate this to a rubberband being stretched to it's limit and then pulled across something.  It's that sort of a sound and feeling.

When we still lived in MD, if the weather was going to be bad, I would actually have days where my joints hurt so bad that I couldn't get out of bed.  Not very often, but once in awhile.  I'd wake up and feel like I'd been hit by a truck.  Always asking, "what the heck happened?"  Hubby would inevitably, always check the weather and say, "it's going to storm."  I used to think this was a wive's tail, that weather could not affect a person's arthritis.  Now I'm a believer.  I even double checked with the doctor to make sure I wasn't going crazy.  Apparently the changes in barometric pressure can affect our joints.  Who knew?

I've had a lung rub.  I don't remember exactly when it was.  I know it was in the winter.  I was stuck in bed and needed pain meds.   I had a pain in my right chest that felt like someone was stabbing a knife into my lung.  It hurt to breathe.  It killed me to cough, or sneeze.  It hurt to raise my arm.  It hurt to even think about.  It hurt to roll over in bed.  It hurt to even type.

A lung rub makes you want to cough.  Like when you have a cold and have "ick" in your chest.  The irritated lung wants to clear itself out.  This forced cough was NOT fun when it caused severe pain!

The lining of my lung was inflamed and irritated, for whatever reason and was rubbing on my ribcage and that was what I was feeling.  It made a crackling noise when the doctor listened with a stethoscope.  If I was quiet and still, I could hear it myself, without the stethoscope.  If the hubby put his ear to my chest, he could hear it.  It sounded like when you rub your finger over a balloon.

If you put your hand on my chest or on my back, you could feel the vibration it caused when it rubbed.

Both were kind of an "interesting" little tricks ... aside from the excruciating pain.  Prednisone ended up being the miracle worker again.  A short 10-15 day cycle and things calmed down.

The lung rub comes and goes.  Never as viciously as that first time and now mostly only if I'm tired or have had a long day.  It never really hurts, I just can feel it.  I know it's there.  It's kind of become my barometer for knowing when I need to rest.  Usually, a good nights sleep and it goes away.

I always seem to have some ulcer somewhere on my hands, arms, or elbows.  Repeated Raynaud's episodes break down the tissues and an ischemic finger ulcer forms.   They last for months and are #1 on my list for pain.  Other ulcers on my finger joints, and arms come from the area being rubbed against something repeatedly or just simple tissue break down.

Ulcers/sores suck and constantly having to put band-aids on sucks just as much, but it's are just a part of my daily routine.  I keep them clean, covered, and protected, and luckily, in my 8 years of living with them, I've never had one get infected.  Whew!

Moving On

The failed IVF attempt was a slap in the face.  I couldn't talk when I called my husband at work to tell him that the pregnancy test came back negative.  All I could do was cry.  We're positive and try to think everything happens for a reason and that if it didn't work, maybe there was a reason why.  It was still hard.  All of our friends were getting prgegnant and having babies.  Even the ones that weren't planning on it.  Yet, here we were, trying and not being successful.

The Raynaud's episode, and resulting "emergency" finger surgery forced us to take a step back and look at the big picture again.  This mini flare came out of nowhere.  It swept in in the middle of the night, or so it seemed.  It stopped me in my tracks.  It could have resulted in a finger amputation.  Or at least part of one.

We decided that we wouldn't do another round of IVF.  No pregnancies for us.  The process was stressful.  Exhausting.  Emotionally draining.  Expensive.

There's no way to know for sure, but some info shows a possible link in hormones and flares.  So, did all the extra hormones we were pumping into me cause this?  Or was it the stress and emotional toll of the process itself?  Or just the luck of having Scleroderma?  We decided not to press our luck to find out if it was one of the first two.

We discussed adoption and decided to talk to an adoption lawyer.  Later.  When everything settled.

Digital ulcer, digital sympathectamy, & a pinky straightening

I have had Raynaud's episodes from the beginning.  They've never been completely gone.  As soon as the temperatures dip in the lower 70s, I have blue fingers.  I've gotten used to it.  Well, not used to it.  I don't notice them as quickly, but when they get bad enough they hurt something fierce and I have to do what I can to warm up.  I've learned to bring mittens, a sweater, and/or chemical hand warmers with me to restaurants, events, and the grocery store.  Even in the summer.  In the winters I know I have to dress like "Nanook of the North" and still be prepared for an episode. 

The episodes cause digital ulcers on my finger tips.   Painful sores that appear usually on the pad of a finger, or near the edge of the nail.  They take a long time to heal.  Sometimes months.  We go through lots of bandages and Bacitracin.  The following pictures are what ulcers can look like.  These are not my ulcers, but pictures I have found on the web and look exactly like what I normally get.

Towards the end of the IVF cycle I developed a Raynaud's episode in my right ring finger that just didn't go away.  For almost a month, this one finger would stay blue about 90% of the time.  We increased a medication trying to increase blood flow to the finger, to no avail.  This was the most severe episode I had ever had. 


This occurred right around our wedding and into our honeymoon.  We spent our honeymoon road-tripping throughout the southeast U.S., in July.  The episode still didn't really go away.  I managed to suffer through the pain and enjoy our honeymoon for the most part.  I didn't say I did a good job at it, I just managed.  I cried at night.  I cried in the car.  I had multiple meltdowns.  I still had a good time ... melt downs and crying aside.


Because I'm stubborn (to a fault) and wouldn't go to the ER on our vacation, by the time we returned home my finger had developed a severe ulcer that looked like this (these are actually my fingers) ... 

and I was in 24x7 pain.  I got an appointment with the rheumatologist, who immediately sent me to another specialist who gave me a nerve block shot on both sides of the base of my ring finger to ease the pain and episode.  


There are vessels in each of the fingers and there are nerves attached to them that tell the vessels when to constrict and when to open.  For whatever reason those nerves were "freaked out" and thought they were cold when they weren't, causing this particular 24x7 Raynaud's episode.  The shot was to block those nerves and ease the episode.


It worked.  Until I got home.  By that evening the episode and pain had continued.


We saw another hand specialist who indicated I needed to a digital sympathectomy.  In this procedure they make a z shaped incision on the inside of your hand, peel the hand open, and go in to strip the nerves away from the vessels in the affected location.  Allowing the vessels to open back up and the blood flow to continue.  My finger was getting normal color back and I had no pain as soon as the anesthesia was wearing off.

 (again, not my finger., just a representation)





In addition, the pinky finger on that same hand had been bent at a permanent 90 degree angle (visible in the pics above with the ulcer) for some time now, causing me to hit the knuckle on everything, which, causes more ulcers.  While the surgeon had me under for the sympathectomy, he straightened my pinky for me.  They go in, cut out the big knuckle in the finger, fuse the two remaining bones together and put a pin through then end of the finger into the bones to hold them into place until fusion is complete.  Then I went back in a few weeks and he pulled the pin right out.  Pretty cool actually.


The nail on my ring finger grows weird and the tip of the finger has a weird feeling these days, but has healed wonderfully.  If you look at the inside of my hand, you can barely see the scar from the surgery.  The main part of my pinky finger is straight, but for some odd reason, the tip is now bent.  Oh well.  Such is life, I'll deal!