Monday, August 23, 2010

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!

Wednesday, August 11, 2010

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!


Monday, August 9, 2010

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.

Friday, August 6, 2010

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!

Tuesday, August 3, 2010

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.