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 ...

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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?