Saturday, May 19, 2012

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.

Friday, May 18, 2012

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!