Arrogance? Denial? Blind Optimism?

Wednesday, August 03, 2016 1 Comments A+ a-

This post has been floating around my brain for just over a month now.  It's taken some time to figure out what to write.  I've felt that I need to.  Writing used to be cathartic for me.  It was a way to keep a document of my journey with "The Big S" and a way for me to be there and help others going through the same thing.

In 2005 after the chemo treatment, I was a balls-to-the-wall Scleroderma awareness warrior.  I spoke to the Maryland State Senate to get a bill passed for more research on how autoimmune conditions affect the population.  Once that task force was created, I was on the task force.  I worked fund raisers.  I was invited to speak at events.  I wrote the newsletter for the DC Chapter of the Scleroderma Foundation.  I formed and ran the Scleroderma Foundation's Baltimore Support Group. I helped at the National Convention.  I participated in drug studies.  You name it.  If it was going to help the Scleroderma community - I was all in.

All while working a full-time job, sometimes going to college, raising teenagers, and continuing to battle flare-up after flare-up.

Those are all great and rewarding activities to be a part of, and yet, they can drain you.  As I conversed with and related to other patients and offered them support, I had a tendancy to take on their struggles with my own.  One can easily lose themselves in being a face of this disease.

The move to Florida allowed me to organically let those tasks, activities and responsibilities go.  It was a whole new world of people that didn't know me as a Scleroderma warrior.  They didn't know the disease free version of me AND this version of me.  They didn't witness the changes.  They didn't see the things I had "lost".  They just knew me as me.  They would learn of my limitations and my struggles, but they didn't see me the same way.  Or at least that's what my mind says.

The first two years here, I continued to struggle with varying symptoms and flare-ups.  At one point, we were looking at doing chemo again.  One week a month for six months.  My reaction to chemo would have meant that I would be in bed for six months straight.  I had had enough.  So, I decided to head in another direction.  After research and following the success of some other autoimmune folks, I changed my diet.  A 100% overhaul.  I went Paleo and had great results.  I reduced my medications down to three.  Eliminated some very vile drugs from healthcare plan and continued to, for the most part, thrive.

That was 4 years ago.  That's when I stopped blogging.  When I stopped dealing with Scleroderma (so-to-speak).  I was "just me" now. I was feeling mostly "normal" again.  Any flares that I had, I chalked up to being from damage already done to my body.  In my logic, lung and heart scarring that had already occurred would no doubt continue to cause some issues here and there.  My joints would continue to get worse.  I continued to chalk it all up to damage already done.

I had convinced myself that there was no new activity going on.  This was all from previous attacks and flare-ups.  Scleroderma was NOT going to rear it's ugly head again and have any hold or control over my life.  I had it under control.

Stress is big flare inducer for me.  While I feel like I have my shit together and I'm handling life well, my body apparently does not always agree.

If I look back over the past two years, I can see all of the stress that has built up in my life and I can imagine that every mini bump I've had has been a reaction to that.  It has in fact been Scleroderma trying to be heard.  I ignored.  This was NOT going to happen.

Roughly a month ago, the symptoms started popping up in a manner that would not allow for me to ignore.  I've been to my local doctor and on medications more in the last month than in the previous six years of living in Florida.   All begrudgingly, of course.  Like a little kid, I stomped my feet.  I doubled up my fists.  I cried.  I had full on meltdowns.  And then, I finally gave in.  I didn't have a choice.

 When I mentioned to my mom "it's not my first time at the rodeo with this disease" hr response was "yes, but the rules of this rodeo always seem to change".  She's right.  Now, I find myself scratching my head.  Wondering what path I take now.  I'm eating some crow and relenting that, no matter how much I feel like I am in control and I make the rules...I don't. That's not to say I give in or give up.  It's just to acknowledge with ALL things in life...THERE ARE NO GUARANTEES!

This doesn't define me.  It's not who I am.  It's something I have.  Something I have to re-learn how to manage in a way that feels right for me.  I have to re-learn how to surrender to what is and work with what I've been given.  Accept things I do not want to accept, knowing that I HAVE to in order to live this life to the best of my ability.  Learning to work with the fact that, as a dear sweet woman I know has said..."my mind is independent, but sometimes, my body isn't"

Those are some hard truths to accept.  Some hard pills to swallow (yes, pun intended) for a fiercely independent and sometimes stubborn 39 year old woman.

So, with all of that said...I'm going to be dipping my toe back in the water.  I'll be sharing here some more and getting involved "out there" again.  First in my own healthcare plan of attack and then on a broader spectrum.  I'm not sure how or where...yet.

And that's OK!


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August 8, 2016 at 4:15 PM delete

I'm sorry to hear that you're experiencing symptoms again, but so glad to hear you're fighting it the best you can. That's all we can do. Thanks for sharing! Take care of yourself!