Thursday, January 27, 2011

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.

Wednesday, January 19, 2011

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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Friday, January 14, 2011

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.

Monday, January 10, 2011

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.

Thursday, January 6, 2011

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.


Tuesday, January 4, 2011

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.

Sunday, January 2, 2011

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!
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.