Wednesday, December 29, 2010

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.

Sunday, December 26, 2010

Chat Schedule

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

Friday, December 24, 2010


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.

Thursday, December 23, 2010

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.

Wednesday, December 22, 2010

Sunday, December 19, 2010

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.

Friday, December 17, 2010

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!

Tuesday, December 7, 2010

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.

Friday, December 3, 2010

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!