Nothing to Report

Since there's not been a post in a month, I guess you can tell, it's pretty quiet in LoJo's Sclero world.

The warmer weather is a good thing.  Granted, the temperatures only dipped a bit here in Florida, it was enough to bring on Raynaud's, ulcers, and achey joints.

I faired through pretty well, in spite of all the ulcers.  They are still healing and will likely be around for at least another month.

It's been more of an emotional toll than anything else, in the past month.  It's sometimes hard to remember the things I used to be independent enough to do and know there's not a snowball's chance in hell I can do them alone now.  It has caused an occasional melt-down.  A pity party or two.

All is good, though.  I'm still able to enjoy a lot with the help of my awesome husband and great people that I DO have in my life.

Even these energetic 7 & 9 year olds are accommodating and understanding and made sure I was ok throughout our fun-filled days at Disney & Epcot.  I LOVE our friends!

6 Month check-ups are scheduled for a few weeks from now.  Hopefully everything remains smooth and even sailing.  I'm enjoying the lack of medical drama and just dealing with maintaining what's here!  Nothing new, please.

Is it bedtime yet?

I'm exhausted again lately.  On Saturday night, I believe I was asleep by 11:30 and slept until 9:30 the next morning, then I dosed off 2 hrs later in the car on the way to the baseball game.  I even had to fight falling asleep on the way home from the game.

Today, I got to yoga late, so I didn't even take class.  I feel it's rude to interrupt everyone else in savasana, so I opted out.  I volunteered 2 hours at Guardian Ad Litem, ran some errands, went to  shelter meeting and was home by 8 p.m.  Here it is, 8:30 and I am ready for bed.  SO tired and exhausted, thinking about it almost makes me cry.

Coming down from months of good energy levels is always hard for me.  I should be used to it.  I've been tired for over 10 yrs.  Oddly, I'm never used to it.  The napping and the sleeping make me feel like I'm missing out on the fun stuff I should be doing.  Missing out on the living part of life.

Other than that, all is good!  Life is great and fun ... when I'm awake!

Nothing new

It's been a month and there are no changes.  I still have my knuckle ulcers.

Everything with a circle is sore.  Some of them are really small and almost gone.  Not really causing any issues, except a dried scab getting caught on a shirt or a blanket.  The larger ones still have a ways to go to heal.

The two squares aren't sores, but spots where the skin is so tight and the finger is bent, that it seems as though the knuckle bones are going to start protruding through the skin.  Something I'll have to discuss with the man on my next visit.

I seem to be picking up on routine naps again.  I was hoping it was just a phase, but it seems that at least 3 days a week I have to go take a nap.  Sometimes as long as 2 hours!  I'm even back to falling asleep in the passenger seat of the car if we go anywhere.

On the whole, I feel pretty good.

I am frustrated that I don't seem to be building muscle back fast enough in my quads.  I'm not even sure it's returning at all.  I've been doing riding therapy for almost a year and still need help getting in the saddle.  I hope it's not something that's "lost forever" like the lost abilities of my hands.  If it is, I'll deal.  It's been this way since 2004, so I'm used to it.  I'm just hoping for more.  I'll keep working at it though and I'll see where it ends up.

I have found a bicycle that will hopefully work for me!  I'm very excited!  We have all of these beautiful shoreline paths along the bay and the ocean here that would be perfect to do some cycling along.  I've searched and searched online and found that bike and then I found a shop here in Tampa that has them.  They assemble and set it up just for you and you get free tune-ups for a year.  Now, hopefully they can change it so that the braking is done with the feet and not the hands and I'll be all set.

Wish me luck!

Ulcers Galore!

One of the 3 on the left hand is almost healed.  Then it will just be sensitive for awhile.  The remaining two are still super sore.  But, with the one going away, at least I can "do" some things again.  I managed laundry yesterday.  Dishes, not so much.

There are essentially 3 on my right hand ...

Yep, index, middle, and ring finger.  Ugh.  Yes, that's also as far as my hand opens or closes.  It doesn't move much more than that position these days.  The left is about the same.

Those are the "easy" ulcers.  They're still mild.  They're not too deep yet.  Hopefully they stay that way.  When they get deep, the get more sensitive and take MUCH longer to heal.

So, aside from the large number of ulcers ... I'm sleeping really funky lately.  I'm having that issue falling asleep again.  When I finally do, I'm out.  I sleep fine then.  I sleep deep.  for at least 8 hours.

When I wake up, I'm still feeling exhausted, groggy and I'm slow to get moving.  Slow to work out the morning aches and stiffness.  Slower than normal.  My hands are sore, and feel puffy and swollen, like I'm wearing oven mitts or boxing gloves.

Once I'm up and finally moving, things are ok.  As ok as it gets and ok as long as I don't hit the gosh darn knuckles.

Status Quo

Not much change going on here.  5 ulcers are still present.  Healing slower than slow.  I wish there was a standard way to deal with them.  What works for easing pain and making them comfortable one time, does not necessarily work for the next ulcer.

I'm pushing through though.  I'm hating it, but doing what I have to.

I hate having to ask hubby for help with the things I had become so excited to once again handle on my own.  It feels like a major regression.  Definitely a blow to my ego and feeling of self sufficiency.

It's only temporary.  That's what I tell myself.  Unfortunately, temporary, in the world of digital ulcers can be months at a time.

I think my elbow is finally 99% healed.  For now.  It will surely break open again one day.  Hopefully later than sooner!

The restless nights last week triggered the 2 a.m. "crazy thoughts."  The thoughts about ... if I'm only 33 now and my body has turned into this ... what is going to happen in 5 years?  15?  20?  30?  30 more years of this?  What if I live into my 70s?  That's 40 more years!  FORTY!  And THIS is some of the easier stuff!  What if the bad stuff comes back?  Can I DO it?  Am I strong enough?

What about my poor hubby?  Yes, he takes care of me because he loves me ... but FORTY more years?  It seems so selfish to ask or expect of anyone.  Seems unfair.

The saying "that which does not kill us makes us stronger" is not entirely true.  Yes, I've grown.  I've done things I would never have imagined I could fight through or handle.  I continue to fight and struggle through whatever I need to in order to continue and I'm proud of myself for doing so.  But, I think on some level, each battle tires me out.  Makes me less able to deal with the next battle.  Makes me weaker.  My pain thresh hold is definitely less than it used to be.  My determination to struggle through something fo the satisfaction of being able to "do it on my own"is not nearly what it used to be.  The list goes on.

Today, I'm just tired.  I slept almost 10 hours last night.  Did nothing strenuous today and could have easily climbed into bed at 7 p.m.

Tomorrow is equine therapy.  Let's see what good things the day can bring.

Restless Nights

I hate dreading going to bed. I like sleep. Its supposed to refresh and rejuvenate you.

The past few nights I've been restless. I can't get comfortable on my right side because there's no where comfortable to put my hand without irritating one sore or another.

If I try to get comfy on my left side, that only lasts about a minute. I have some unknown ache going on when I lay on the left side. Doesn't hurt during the day. Just at night when I lay on it.

So, now I find myself getting anxious at bedtime. Anticipating a night of tossing and turning and uncomfortableness.

It reminds me of sleepless nights before Ambien.

I do have a couple emergency Ambien pills left. Just in case. I'll do all I can to avoid using them though. I wan to keep my meds list to a minimum. Only taking the ones I HAVE to take.

Luckily, I don't have to get up early for a job. THAT'S a saving grace!

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One of THOSE days

Apparently, I was having too long of a run of great luck.  As "great" as it can be with Scleroderma.

That run has since ended.

It seems sores are like magnets.  They are just drawn to anything that will not feel good.  Car doors.  Jeans.  Counters.  Doors.  Drawers.  Counter tops.  Counter edges.  You name it.  The list goes on.

I haven't done dishes, the cat boxes, or completed laundry by myself in weeks.  No worries, hubby and the boy have been helping, so it's not like those things are spilling over.  It's just that the extended time in the water to rinse, or banging the sores on the dishwasher baskets or prongs, or not having a good grip and sliding my fingers off the edges of things ... they're just not worth the pain and agony.  Not worth the tears, meltdowns and tantrums.  Because, honestly, when something hits a sore and makes it hurt badly enough that I cry or curse out loud, I DO have 33 year old tantrums.  I throw things.  Not breakable things and not AT anyone.  But, I have been known to curse out loud, "growl" and then chuck a Glad bowl on the floor before walking away to go cry.

The handle of the cat box scoop hurts.

Grabbing the laundry, like jeans, pants, anything with zippers or buttons hurt my sore fingers.  And, please, don't let me whack a sore elbow on the washer or dryer!  That's a whole 'nother story.

Am I proud that my reactions are down to tantrums?  No.  But, it's my coping mechanism.

I'm just not strong enough or rational enough in THAT level of pain to do anything else.

So, within 15 minutes, I had 2 of those this morning.  TWO!  And a bunch of little ones to follow.  It's easy to contemplate going back in the bedroom, closing the blinds, putting my pajamas back on and climbing back into bed for the rest of that day.  Or until the ulcers heal.  Not necessarily because I'm depressed, but because it's safe there.  There's nothing to hurt myself on if I'm safely tucked away in my bed.  Well, except the remote control, the edges of my cell phone, a magazine or a book, or my laptop, or .... or ....  or ....

But, life goes on and I have things to do and to take care of.  Commitments, however few and minor, to uphold.  A life that I want to live.

It's currently 38 degrees here.  THAT does not help.  31 when I awoke this morning.  Not much better tomorrow.

I had to cancel riding therapy for tomorrow because it's too cold to be outside that long in.

So, today is just one of THOSE days.  Another one of the ones I hate.  It's more frustrating because it's not something I can change.  For most things, I can "choose" to react a certain way and to "choose" to have a certain kind of day, regardless of the crappiness going on around me.

It's another thing to be that positive about pain.

Alas, I hate whining, so I'm done now.

Here's to hoping tomorrow has something better in store.

I've been tired a lot lately.  Between having a cold (which I fought off with no meds), the now 4 sores, and my schedule, I've been pooped.  Exhausted.  Taking daily naps again of at least an hour long.  Sometimes longer.

I've cut my schedule back a bit.  I'm trying not to take on more than 1 scheduled thing a day.  We'll see how that works.  I got over zealous and took on too much.

The sores on my hands are a chore to deal with.  Both physically because they are painful and mentally because it's just exhausting to be sure not to bump them on things and then to deal with the excruciating pain and meltdowns that follow when I DO bump them on things.  A good day can be completely changed in an instant by rubbing or bumping an ulcer on something.  I can turn into a colossal bitch like someone flipping a switch.  As much as I want to be zen and chill, that pain overrides any rational, conscious thought process.

Yoga continues to be helpful for my large joints.  It's slow and the progress is sometimes so tiny that only I can sense it.  It's still a good workout for the rest of my body.  In a way that is manageable for my abilities.  I have the sweetest yoga teacher.  She teaches and entire yoga class, but always makes sure to check on me to make sure that I'm ok with the postures we're working through.  She is great!  Yoga continues to strengthen muscles and improve joint mobility, even if only a little at a time.   The calm, serene nature of the class and the ending "meditation" are great for my mental health.  When I left for class this morning I was frazzled.  I had bonked my hands and then had a bloody nose, starting my day off in pain and cranky.  I got to class late and almost didn't go in because I hate disrupting other peoples' practice.  I went in anyway.  I'm glad I did.  I needed it.  It put me back on the right path for the day.

A massage added to today's therapy was much needed.  My massage therapist rocks.  Wait, have I said that before?  LOL!  She's so conscious of my limitations and is so good at pushing as far as is comfortable for me, without ever going beyond that.  She is another gem in my life.

So, there you have it.  "You take the good, you take the bad and there you have ... the facts of my life" ... today.

I've been tired for 13 yrs!

I was out of the house for less than 8 hours today and I'm exhausted.  I've been tired a lot for the past couple of weeks.

I've been tired 90% of the time for the last 13 years.  I was hoping that one day it would go away.  Guess not!

It's so sad to me that 8 hours can wear me down so quickly.  A measly 8 hours.

Geesh!

One more day

Today is one of those days where it feels like I can't make it through one more day.  The thought of touching ANYTHING makes me wince.

My fingers hurt.  They are just tired and they just hurt.  Every package from the store, every bowl with an easy open lid, the edge of a straw, the little grippy ribs on the top of the milk, the tongue on my shoes, the elastic on my yoga pants, even the salt on a cracker ... every single item I've touched today has some sort of an edge that hurts.
I don't even want to think about trying to make myself dinner tonight.

Thank goodness hubby went to the grocery store with me this a.m.  Otherwise, I'm sure I'd have had a meltdown or two before I was done.  As it is, I banged my pinky sore on the cart at the checkout.  At home, I'd allow myself to use a curse word and yell in pain.  The yelling and "letting it out" really helps.  At the store I don't want to scare the crap out of people or make a scene.  General population, doesn't understand that "banging a little ole knuckle"is actually excruciating and throbs and they don't understand the yelling, or the tears, or any of that.  So, I hold my breathe and do a mental groan to get through.

The 2 sores I have are just a huge pain and nuisance and of course on the 2 places I need to use to get anything done.  Avoiding them because of the pain, is a chore and has ... yep, you guessed, triggered sore #3.   On the "back-up" spot that I use to get anything done.

It even hurts to wipe my tooshie!  Yep, that's an image to share, but I did warn that it wasn't always going to be pretty at Sclero Scoop.  No sugar-coating here.

Alas, I know this too shall pass.  Just as it has every other time.  It's just one of those days.  And I don't like these days.

Scleroderma's not SO bad

No, it's not a "treat" I'm happy to be stuck with for the next *gulp* 30-40 (if I'm "lucky") years.  It's a drain on me and a struggle, to say the least.  It has destroyed some of my hopes and dreams and some of my abilities.  Some days, it down right sucks.  

In all of it though, it has brought me some great gifts.  I've had my mid-life crisis in my 20s and I feel that I appreciate life and try to find the positive in everything.

Those destroyed hopes and dreams?  I've let them go.  I've realized maybe it was for the best.  Does it still hurt from time to time?  Hell yes.  But, that is life.  Suck it up and drive on.  Now, I've got new hopes and dreams.

It has made me realize that even though I have it bad, there's always someone who has something worse.

It has made me realize that life is fleeting and wasting time on being caught up and emotional over things that I can not control, is just that - a waste of time.  Yes, I can take a moment to recognize whatever has happened.  Even wallow in the sorrow and sadness of it.  But just for a moment.  Then, wipe away the tears and suck it up and drive on.

It has given me the ability to let some friendships fade and give others the ability to shine.  It's given me the ability to accept that those faded friendships weren't bad and they don't have to be gone, but that I don't have to be responsible for making them last.  I used to think I did.  If so and so didn't check in after x amount of time, well, the good friend in me had better tow the line and make the contact.  BULLSHIT!
I don't have to make all the effort.  Some of the effort, yes.  Not all.

People really do grow apart.  It's ... just a part of life.

If I look at it like that, Scleroderma might suck, but it's not SOOOO bad and I'm OK with that.

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!