Wednesday, September 29, 2010

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!

Saturday, September 25, 2010

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?

Wednesday, September 22, 2010

Reflux Sux!

I hate being awakened in the middle of the night when I'm sleeping so soundly, by choking on reflux.  YUCK!

It doesn't happen often, as the Ambien usually keeps it at bay.  However, last night was quite a doozie.  My subconscious woke me up before I actually started choking.  I was somehow able to get my senses about me to not freak out and start gasping and choking and got myself in a vertical position to allow gravity to work it's magic.  Gravity works slowly with reflux.

Then, some of the acid hangs around in the back of the throat, burning and tasting disgusting and making me cough.  Again - YUCK! 

So, in the process of coughing and hacking to get the nasty crap out, my lung hurts today from all the extra activity and my throat hurts a little too.   I discovered a little bit of Robitussin helped the whole process!  It seemed to cling onto any remaining crap left hanging around and calmed the coughing.  Guess I shoulda tried that years ago!  Something definitely to keep in mind for next time!

The reflux spell kept me up until about 5 and then Lily thought that I needed to be awake to play kitten games at 10.

It's going to be a long day!

Wednesday, September 15, 2010

Still Rockin' and Rollin'

Things are still moving along well.

No bandages and only that one elbow ulcer for 2-3 weeks now.  I'm mighty happy with that!

Noticing my shoulders are achey in the mornings again.  The same as it used to be.  Right now just mildly annoying.  It gets better as I get up, get moving and get the day started.  Hopefully it stays mild!

My sleep is still off.  I'm sleeping soundly for 8-10 hours without the Ambien.  Just falling asleep late and getting up REALLY late.  Hubby is working 2p-10p so, that probably is part of it.  Last night, I slept hard though!  10+ hours of sleep with only one 15 minute interruption.  I woke up with a headache that turned into a migraine as the day went on.  Seems to be easing up now though.

And what the heck is with this acne?  It's clearing up finally, but still!  Not good for an OCD "picker!"

Other than that, all seems to be good.  Gearing up for my trip north to visit the cardiologist, the rheumatologist, the lung tester person, and then my family for about a week.  It's gonna be cold there.  No shorts, tank tops, and flip-flops for me.  I haven't worn "real shoes" in 6 months!  Can my feet handle it?  I guess they'll have to or I'll be a walking Raynaud's episode and we don't want that!

Thursday, September 9, 2010

Keeping things in perspective

I'm an intolerant patient.  Not intolerant with my doctors or medical staff members.

I'm learning that I'm intolerant with other Scleroderma patients.  I feel really bad about this too.  I feel like I should be more tolerant, but I am just not.

I have problems tolerating other patients that act like their world is ending.  Like they are the only ones to ever go through this.  Like this is the worst thing that could ever happen to them.  Like their doctors should be solving all of THEIR problems and that its the doctors fault when things flare up or can't be controlled.  

It's not that I don't sympathize and empathize with them.  I do.  I definitely do.  This disease sucks.  Life with it can suck.  Yes, some part of every day leaves me angry, sad, scared, or any of a plethora of emotions.  So, I completely understand patients feeling that way.

I just don't like it when they can't move past that.  When they wallow.  When they let it take over their lives.  Use those emotions to do something.  There ARE ways to make your life better.  YOU can take control of that.  So, DO something about it.

And don't make this 100% of your life.  Need to vent?  Feel free to do so.  But, find the right forum.  Don't tell every person you meet all of your woes.  About every ache and pain you have.  Do you want other people to do that to you?  I'm not saying to hide what you have.  Please, spread the word.  Raise awareness.  Just be mindful of others when you do it.

And, least of all, remember, no matter how bad you feel, how bad your day is ... someone, somewhere is having a worse day than you.  Be happy that you know what you have and you're getting treatment for it.  There are people that are still struggling with getting a diagnosis and aren't getting any treatment.

Remember you could be sleeping in a foxhole in a desert somewhere.  You could be living in a hut in Africa with no medical care what so ever.

In spite of Scleroderma, life really IS good.

Tuesday, September 7, 2010

Lookin' good

Lab results "continue to look very good."

Is this 4 or 5 months now?  Who cares, really?  SO happy to hear.  Such a relief and a load off my mind.

Here's to hoping it continues!

Monday, September 6, 2010

A little behind

I was just chatting with a friend on FB about this blog and realized I'm a tad behind on my updates.

I came back from our Toronto trip in August, with a cold.  While on vacation there, I had to wear pants and use my Snuggie from time to time.  Yep, it was August and LoJo had to bundle up.  The temps are a little cooler up there and then there's the inevitable a/c.  You know it, anything under 75 degrees and I'm getting a Raynaud's episode.  I did pretty good though and managed to keep most of the episodes at bay.  Like I said, I did come back with a cold though.  Nothing major.  I fought it off with no medications.  I had one day where my lung was irritated from the sneezing and such, but it all cleared up on it's own.

I have one sore on my elbow and one on my right index finger.  The others have healed and I'm currently not wearing any bandages.  Knock on wood.  Hopefully I didn't just jinx myself.

My feet are mostly doing better.  I have a sore or something on my heel.  It started a few weeks ago and I can't quite figure out what it is.  I'm just keeping an eye on it for now.

Still sleeping without Ambien and loving it!  It's one less pill in the cocktail and one less expense.

Monthly blood tests were last week.  I'm hoping for "normal" again.

We went on our first cruise this past weekend.  It was awesome.  Good concerts on the ship, got to hold some sea turtles in Grand Cayman, and just all around had a good time.  I believe I was the only person the ship to sleep in fuzzy socks, contemplate wearing my mittens (yes, I packed them) for my frozen drinks, and wear a jacket during the indoor concerts.  Again, gotta love the temps below 75 degrees.  *grumble grumble grumble*

I feel some purple fingers and toes coming on as the nighttime a/c has kicked on (I like it cold to sleep) so I need to go climb under the covers to keep them warm and pink.