Saturday, August 27, 2016

Single White Female

Pretty much all blog posts on here have to deal with the physical affects of a life with Scleroderma. Lately, a different plan has been formulating for this post.  Like most of my posts, it has been swirling around for days.  Maybe longer.  Fermenting.  Growing.  Evolving into what you now get to feast your eyes on.

Tonight I'm going to touch on how Scleroderma has affected me as a being, apart from the physical body.  How it has helped to shape and direct the emotional, spiritual, and personal growth and path I've taken in recent years.

The story will likely be long and at points, you may ask..."when the hell are we getting to the point? And what does this have to do with Scleroderma?"  Hang in there.  Trust me.  I've never let you down, yet.  Have I?

We need to go back a ways to start this one off.  Back to the days of childhood when life's possibilities were endless.  Back to the days when we imagined life going on forever and we're taught about fairytales and happily ever after that came with Prince Charming and knights on gleaming white horses.

I wasn't the little girl that imagined her wedding, played dress-up, or played with Barbies or most of the things little girls played with at that age.  I was the tomboy that imagined being a truck driver or joining the Army with my little best friend down the street.  By high school I had decided I would probably be a pediatrician, because, while I loved the kids I babysat and I rocked at it, I liked the idea that I could be around kids all day and yet, they would go home with someone else and my responsibility with crying, pooping, teething kids would be done for the day.

As it turned out, I did end up joining the military.  Then, I married young.  It was just part of the path. Shortly after marriage along came my desire for kids of my own.  I essentially wanted babies right out of the gate.  It seemed to be how the rest of the world lived.  You got married.  You had kids. Everyone seemed happy.  As in..."happily ever after".

I wanted that, too.  So much so that my first marriage ended largely in part because my then husband said "I can't live a life with kids".  In my second marriage, we spent $30k in IVF therapies to try to conceive a baby of our own - to no avail.  I finally cut my losses and resigned myself to the fact that biological children were not going to happen for me.

Our marriage continued along happily for a few years, filled with lots of laughter, travel, and spontaneity that we would likely not have had had we had children.  Eventually, that marriage ended, too.  My husband was no longer happy and needed to move on.

To say that I was devastated is hard for me to admit.  I like to think I'm a bad ass with my emotions and can get myself through anything without a scratch.  While I DID make it through the other side better for it all, I allowed myself to be wrecked for quite some time over that loss.

So, now, here I am.  Knocking on the door of my forties.  Single and refocusing my life on managing my health as my new number one priority.  It's not always easy.  Some days it's overwhelming.  Some days, I can't manage a lot of it on my own.

I have recently added a roommate to my life.  A male friend and his daughter have come to live with me to be extra help for me, while writing a new chapter of their own lives.  We're all looking for a "better" path.  Our paths are different in most ways and yet, we are coming together to help each other out.  It's hard for me to admit that I am not the independent woman I like to be.  I have to remember, though, that it;s not because I don't want to be or because I don't try...there are just plenty of things I physically need help with.  Yes, I can manage, but with struggle, frustration and anger.  This situation alleviates a lot of that.

To many, we are an unlikely set of people to become roommates.  There are skeptics on both sides of the house.  One such individual, not knowing me, voiced a concern that I might be hoping to turn this situation into a relationship.  This pissed me off.  That's not the type of person I am!  If I want to be in a relationship with someone, I will honestly work to make that happen.  Not try to sneak into it.   Now, I normally try not to let things others think or say bother me too much, and yet, for whatever reason, this has stuck with me for two weeks now.  I've mulled it over and over.  Then I've mulled it over some more.

If I am truly honest with myself, I don't want a relationship beyond the friendships I have in my life. The majority of the reasons are because of my life with Scleroderma.  I'm a big time realist and the things that come with this life are not things that will easily translate into a new relationship.  Hell, they didn't help keep the last two, that's for sure.

I know that my looks aren't what they once were.  I'm also aware that may never recover.  I don't have the desire to put myself out there and put my heart on the line when I know that, most of the time, our first lines of connection with someone else are via sight.  I didn't say all.  I said most.  I just don't have the desire to put that kind of effort into something that I imagine isn't going to get me anywhere.

Next I have to look at the list of things that don't make me your average woman and in turn would complicate most any attempt at a relationship.  Dating is usually based in some aspect on dinners, days out, finding common ground activities that you both like and can do.  That list is all quite skewed for me.  I won't go into it all because to do so makes me feel like I'm whining and that's not the case at all.  Let's just go with the general idea that the daily activities for the average person are not the same for me.

If I were to make it past those hurdles, comes the intimacy issue.  One that I've not heard many (if any) other Scleroderma patients discuss.  I'm going to be honest and put it out there.  The lady bits are broke as shit!  My last husband and I were married for 6 years and the last time we had full on intercourse was on our honeymoon.  It's not to say I can't enjoy myself, it's just to say the tunnel is closed to traffic.  I can't imagine many men are going to want to pursue THAT relationship.

I don't sleep well at night.  I get up a lot.  I don't want to share my bed and worry that I'm impacting someone else's sleep schedule every night.  I have enough stress about my own sleep, let alone being concerned about another persons.

I don't want to educate another person on the ins and outs of this life and take the chance of them discovering its more than they can handle AFTER I've become attached.  It's easier to just not go there.

Yes, I know all the lines people have about "you don't know until you try" or "don't sell yourself short" or whatever classic line comes up when someone has said they're done with relationships.

Here's the thing, yes, I sometimes miss the fun and friendship I had with my former husband.  When it was good, it was good.  We were great friends.  We had great fun.  There are still daily occurrences or "inside jokes" that only he would get without explanation and yet ... I wouldn't want that relationship back, nor do I want to try to build another one.  I don't feel as though I'm jaded or hardened.  I think love is great.  I think relationships are great.  I just don't want one with another person in that construct.  I have a relationship with myself and my Scleroderma that, at this point in time, require the majority of my time and energy. I have enough work just to live life that I don't have the time or energy to consider someone else's needs or feelings like that.  Because when I am in a relationship...THAT is exactly what I do.  I can't afford that right now.

This is me living MY happily ever after.  Living.  My goals and bucket list may be becoming less grandiose, but I still have plenty to strive for.  I still live a good life.  I have all of the things I NEED and most things I've ever wanted.  I have family that loves me.  A home that is my own.  I share it with two wonderful people.  I have friends that do amazing things for me.  I may be a little confused right now as to my purpose and where my path is taking me, know what?  I have my own awesome damn horse to carry me on that path!  She's not white and that's fine!  White shows all the dirt!

My happily ever after may not be what I originally dreamed it would be...

And that's OK.

Wednesday, August 3, 2016

Arrogance? Denial? Blind Optimism?

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!