My Head Weighs 20 lbs!

In mid-July we spent a week in Vegas with awesome friends.

I was already achey before we left because I have stopped the prednisone.  No major aches, just enough to remind me they are there.  Not enough that I want to go back on the prednisone yet.  We didn't do a ton while in Vegas, but just enough to aggravate my body a little more.  By the time we came home, I was done.  Spent.  Sore.

As seems to be the case lately, I came back from vacation with a cold.  Something I should be aware of and maybe try to prepare for on our next travels.  They don't last long.  just a few days.  Enough to kick my ass a little more.  Nothing like being kicked while you're already down.

It's all good though.  I survived!

I was supposed to repeat my lung function test in July since the one in May showed a 10% decrease.  I have yet to do so because I don't want remnants of the cold to affect the test.  Also, because, quite honestly, I'm not sure I want to know if it's gotten worse again.  Sometimes, ignorance IS bliss.

My shoulders and back have been bothering me more lately.  M left shoulder seems to "catch" from time to time and makes a popping noise when it releases.  Fun!  I think it's because my alignment has changed because of arms, hands, and wrists.  It's hard to explain in words, but visually, you can definitely see it.

Then, there's the 20lb head.  I can barely lift my head to turn over in bed at night.  My neck hurts and seriously feels like my head ways much more than it actually does.

So, my awesome massage therapist and friend has been seeing every other week instead of once a month lately and I've unfortunately, been using the "good meds" to sleep at night.

And, surprisingly, I still consider this as feeling "good"

Six Month Check-up

My appointment was on May 29.  I'm a little behind with the update.  I was off visiting my family after the appointment and just got back home a few days ago.  Since then I've been too lazy to post.

The appointment went EXCELLENT ... overall.

He said I look great!  My skin is doing well and I have noticeable laugh lines.  Usually a bad thing, but in this case it's good because it means my skin is "relaxing" a bit.  The only positive side affect of having Scleroderma was that it made my face taught and made me look younger.  I'll take the laugh lines, though!

We discussed Boniva for the osteoporosis.  Fortunately, I was able to strike a deal with him on it.  I am going to try diet and exercise for the next year.  No Boniva.  If I can reverse some of the bone loss, we're good.  If not, I will agree to take the Boniva.  Wish me luck!

My lung functions has decreased.  By 10%.  NOT what I wanted to hear.  However, I'm not freaked out.  It could be that I used a new lab this time.  I have to repeat the test in two months and go from there.  If it's the same in two months, then I have to get a high-res CT scan and we'll go from there.

Everything else looks good enough that I can ween off the Prednisone, decrease the Norvasc, AND I don't have to travel to Baltimore in November ... as long as I establish myself with a local rheumatologist. Then, I can see that doctor for my November appointments and see the man in Baltimore in May/June, when the weather is warmer.

All in all, a pretty OK check-up.

And I'm OK with that!

I hate "the itchies"

For the past few days I have been I-T-C-H-Y!  My face has been tight and dry and itchy.  My arms have been itchy.

So much so that I've been doing multiple lotion applications during the day.

I wish I could say it's the weather, but it's Florida.  It's humid.

What I CAN say is that it's been a very stressful week.  Because of the stress and the fact that I have no will-power, I have eaten more than my fair of shitty food.

Stress + shitty food = skin flare?  I hope not.  Likely I'm just being paranoid, but when the itchiness sends me mentally back to 2005-2006 and I start feeling a little panicky it's hard not to worry.

Yearly Check-ups & Osteoporosis

It's my birth month, so it's yearly check-up time.  It's a good way to not forget to get them done.  

I have had my pulmonary function test (PFT), bone density scan, pap smear, and a consult with my new cardiologist.  I'll have my monthly blood work this coming week.

I have been apprehensive about doing these tests here in Florida.  I have had a great medical team back in MD and wasn't ready to start over.   In MD all of my specialists have worked with my rheumatologist for years and know how Scleroderma works.  They know how to treat it.  I never have faith that new doctors will even know about the disease, let alone how to manage it.

I have been pleasantly surprised!  It was odd being the youngest person, by decades, getting a bone scan, but the technician was awesome.  The results of the test were not.  I have osteoporosis in my hips and my lumbar spine.  I've got the bones of a 70+ year old.  Yay.  I'll talk more about that later.

The PFT is always my least favorite test.  I dread it.  It makes my nose run and my lung rub shows up.  However, the lady that performed this test was awesome.  She was educated on Scleroderma and how it has affected my body.  She knew what I was talking about!  What's more awesome is that the pulmonologist that she works for, just transferred here from Hopkins about a year ago.  He knows about Scleroderma AND works with a rheumatologist that has worked with scleroderma patients!  My heart is all a flutter!  Well, of course it is, I have an arrhythmia ... but now it's a flutter for other reasons!

The pap smear.  Well.  The test itself sucks.  I don't care what anyone says, the Scleroderma has affected my lady business, too.  Add some menopause ... and ... well....  Let's just say a pap smear or losing my virginity ... running a pretty close race on the comfortable scale!  Regardless, the nurse practitioner who does it is AWESOME.  I just love her.  Oh and the results came back normal.

So, all in all, it's been a pretty ok month for tests and building my medical team here in FL.

Now, the osteoporosis..  Yeah, not happy about that.  I know the appointment with the man in a week is going to be fun.  He's going to suggest Boniva or Reclast or something like it.  THIS does not make me happy.  More drugs.  More drugs that have horrible side effects and not necessarily great reviews.

I have a plan of attack.  I know that eating better makes me feel better in regards to other symptoms of my disease.  I know that a Paleo or "clean" diet often times alleviates autoimmune issues.  I'm my own proof.  I did some research and found some studies, reports, whatever, of women fighting osteoporosis with the Paleo diet and weight-bearing exercise.  There are also studies that show hunter gatherer women don't have osteo issues like women in developing countries.  So, my plan is, for the next year, to make sure I'm getting enough of all of my vitamins (because osteo is about more than just Calcium), eating a clean diet, and walking - a lot!  If, in May 2013 my bone scans are worse, then I will relent and take the horrid drugs.

Oh and I'll be cutting out caffeine.  I'm working on eliminating Pepsi from my diet, too.  It won't be easy. Many even say that with everything going on with my health that I deserve a vice.  I deserve something that makes me feel good.  I'm having a hard time with that approach.  Don't I deserve instead to not shrink by up to 6 inches?  To not worry about breaking a hip just from driving my Jeep?

I think my thought process isn't going to be about what I deserve to make me feel good, but what I deserve to be healthy.  To not be forced to take horrid medicines.  To watch my life pass me by because I'm stuck with another crappy disease.  When I know that I can make a change by just changing what I eat, why wouldn't I at least try?  What's it going to hurt?  Certainly, not a damn thing.  Eating healthy has never caused harm, to my knowledge.

Like I've said before, I'm not delusional and convinced that I'm going to be my old self again.  The damage that has been done by Scleroderma isn't going to go away.  The scarring is permanent.  It will likely shorten my life.  However, I can reduce the chances of new symptoms.  I can cause old ones to disappear.  I can live the hell out of this life and not let one more damn condition slow me down or sideline me.

Fuck that!  (Sorry for the F bomb, folks)

So, we've done our first 5K and we have at least 3 more already scheduled.  Possibly 4.  We're walking every week and trying to get a 5K in once a month as motivation and to support good causes while we're being healthy.

Hear that Scleorderma and Osteoporosis?  You can SUCK it.  LoJo's kickin' ass and taking no prisoners!

Stress Induced Flares

I know. I know. Almost three months without a post and I can't come back with anything positive?

No worries, this isn't a post full of complaints. It might be a fair mix of good and bad.

I'll start with the bad. While I like to think I'm a tough girl and can handle most anything thrown my way, my body would disagree. Since my stitches came out, there has been one busy thing after another. Our son graduated from basic training, visitors were here for two weeks, my dad was in the hospital for a month and a half and I ended up taking a two week road trip. Alone.

One week was to deal with family affairs. The second was a vacation.

By the time I reached my vacation destination, I was exhausted, waking with large joint aches & pains, and had developed 3 fingertip ulcers.all stress induced, I assume.

I haven't had fingertip ulcers for over 2 years. Only knuckles ulcers. The two have different causes, which are indicators that this mini-flare was all stress related. I call it a "mini-flare" because, now that I've returned home most everything seems to have quieted down.

Except for ............. You guessed it ... The exhaustion. What's new, right?

So, even though my mind says one thing - that I'm strong and can handle anything thrown my way, Scleroderma likes to remind me otherwise and let me know it's still hanging around. Just for old times sake?

The good news is that my right hand has healed well. I can do some things I could not do before. Some things continue to be a struggle, but overall, things are much easier.

I'm OK with that.

Can They Fix My Elbows?

The new hand is still working out well.  It is FAR better than it was before.  Thank goodness for that.  I am really appreciating and enjoying the relief.

What I'm not appreciating are the ulcers forming on my elbows.  They start out as really deep, dry, almost scab-like skin.  Then they turn into sores or ulcers.  That, like my fingers, can last for months at a time.

I've been noticing that my elbows were tender the past few days.  By this afternoon, the right one is sore enough that I can't prop myself on it in bed.  I have to roll over with caution and care.  Hopefully, they heal quickly.

Today's afternoon nap ... 2 1/2 hours!  Holy cow!  I was feeling pretty energetic yesterday and today.  Getting a lot accomplished.  Yesterday's nap was just half an hour and did the trick.

Today, by the time I laid down at 2:30 I felt like I really had zero energy.  Tonight, I dont just feel like I have zero energy.  I actually do have zero energy.  I just want to sleep some more.

Which is a BAD thing.  I don't even have the energy to make dinner.  I can't even pull together a recipe because I'm all foggy and cant focus.  I just want to close my eyes some more.  I've been making nothing but healthy, clean meals for the past two weeks ... tonight we're eating crap.  Pizza Hut will be delivering to our front door.  I think I'll ask hubby to throw together a salad to go with the "crap" so I at least get something healthy in my there, too.

Hopefully tomorrow I'll be back on my game.  I don't want to fall into the bad food rut, again.

Right Hand Arthrodesis is a Success!

I wrote this on the plane on the way back from Baltimore on 1/27/12, but had yet to ost it because I was waiting for pictures to go with it....


Transformation one is complete and deemed a HUGE success.  The seven weeks of healing were long.  V-E-R-Y L-O-N-G.  Very worth it though.


On Monday one pin "fell" out at home.  It was already loose and didn't hurt at all.  In fact, I didn't even know it had fallen out until I saw the blood on my finger.  This morning the remaining pins were removed by my awesome hand surgeon, Dr. Spence.  These last two pins were a little painful coming out, but nothing a little holding my breath and clenching my teeth didn't take care of.


Immediately after my appointment, we headed to Kohl's so I could take advantage of their jewelry clearance.  Let me tell you, I did!  I got five new rings to wear on my middle finger, like I used to love to do, back in the day.


I now have a "functioning" right hand.  My thumb isn't flexible like it once was, but it's ok.  My fingers don't straighten, but it's ok.  My fingers don't bend in the middle, but it's ok.  They wont get ulcers on the knuckles anymore, that's ok.  MORE than ok.  My grasp is weak, but it's ok.  My fine motor skills are lacking, but it's ok.  Though I'm still limited in some ways and always will be, that's not important today.


Today, what's important is what my hands CAN DO.  That in and of itself, is completely and totally amazing.


Just seven weeks ago, I had to use two fisted hands to hold a drink.  Today, I can hold some smaller cups and bottles in my right hand alone.  I can fit my hand over the top of a small fast food drink.  (Don't worry, it was iced tea)


Since 2010 I have adopted Lily, Cooper, & Gretchen and until five weeks ago, I had never felt their fur on my fingertips or on the palm of my hand.  Now I can pet them and feel how soft Lily is, how fluffy Cooper is, and how Gretchen has typical, course, German Shepherd hair.


Driving my car was becoming difficult.  I had to force my fingers around the steering wheel.  Parking lots and backing into the driveway took much care.  Now, my right hand comfortably fits around the wheel.  Steering is still a little difficult as my gripping ability is now drastically altered because of the lack of flexing ability at those middle knuckles.


I can wear rings again, I can more easily cut and file my finger nails.  By the end of the weekend, I have a funny feeling that I'll have painted nails, too.  I can use lip gloss out of pots.  I can loosely tie my yoga pants.  It's not a great tie, nor will it ever be, but it keeps my pants on while around the house.


I can scratch an itch with my fingernails.  I can get goop out if the corner of my eye using a fingertip.  I can scratch the inside of my ear without needing a Q-tip or pen cap or something of the sort.  I can kind of sort of pick nose.  Yep, I just said I pick my nose.  I think most people do, just nobody wants to own up to it.


The list continues to grow almost daily.  Things that I've either given up on in the past or struggled like hell to do.  It certainly does help with appreciating the small things.


Now, life hasn't miraculously become rainbows and butterflies.  Some of the same shit is still shitty.  There are some new limitations and challenges, but this post isn't about that.  This post is about the awesomeness that I am experiencing.  I'll save the the other stuff for a day when it's bugging me and things are rough.  Right now, I just want to ride this high for awhile longer.


Here are some pictures of the process.

My hands prior to the arthrodesis.  They didn't open
or close any more than this. In these pictures I have two ulcers
on my index and middle fingers and one on my ring finger.
Those ulcers would last for months at a time and be
excruciating.

This is what my hand looked like afte the surgery.  You
can see the incision marks where my knuckles were.
The blue things are caps on the pins that run from just
at my cuticle, through my bones just past the incision
marks.  Those pins hold the bones in place while they
grow together.

This is the final product.  They don't straighten any more
than that and the fingers don't bend in the middle.
They still do bend at my hand allowing for some grip
and much added flexibility at that joint.