Wednesday, January 4, 2017


As many things in life follow a cyclical pattern, so too, do my emotions and outlooks on life, the world around me, and how I view it all.  This, in part, is usually in connection with how my Scleroderma life has been progressing.  Or not.

In spite of my father's passing, during 2015, I rocked out life.  I traveled over 10,000 miles behind the wheel - by myself.  I photographed the sunrise over the Atlantic Ocean, hopped a plane and flew to California to arrive in time to photograph the sunset over the Pacific Ocean - in ONE day - on the first day of summer. I traveled the entire Eastern seaboard. I had a great year.

It exhausted me, of course. By year's end, I started having more achey days and needed to focus on my health and my body. I had mostly faired well, though.  

By the summer of 2016, things had changed. "Small" things continued to pop onto the scene. An inflammation in the cartilage in my neck were painful and made swallowing difficult. Next up, double ulcers on one thumb, that lead to a bone infection wiped me out. The majority of the summer was spent on my sofa sleeping, on two rounds of antibiotics and under the influence of pain killers. 

In late summer I headed to Baltimore for my yearly visit with my Rheumatologist. Overall it was a good visit, addressing some issues that we need to make priorities and making a plan to get them on track. With the exception of unusually large amounts of protein showing up in my urine, most everything else was "workable". 

I repeated urine tests a few weeks after being back home in Florida, in the hopes that it was just a passing fluke. Unfortunately this was not the case and I made an impromptu trip back to Baltimore for a week to meet a new ember of my medical team, the nephrologist and get some more tests done. Fortunately, there appears to be nothing that we need to address. I am apparently one of the "lucky" Scleroderma patients that just has high amounts of protein in their urine. Therefore, we will just monitor this.

I spent most of 2016 just exhausted. Both trips to Maryland were extremely difficult for me to manage. So much so I ended up taking 2 days to make the drive there, when I usually take one and then putting my car on the train to come home.  All because I was just too exhausted to manage the drives.

If I throw all of this together with the limitations that I already have, everything around the house "fell apart" - cooking, cleaning - all of it. I came to the realization that while I CAN live alone, my life is much easier with help around the house. 

So, I took on a roommate. That has been an adjustment to get used to. I've been used to quiet and zen for the past two years and life has definitely changed. 

Just prior to Thanksgiving, my best friend unexpectedly lost her husband to a heart attack. We aren't even 40 yet. Death of any person at a young age can be difficult to navigate emotionally and to make sense of. This has been such a struggle for me. This hit me harder than the passing of my own father. If life was ever to be deemed "unfair" - THIS is it. A wonderful, loving, supportive, husband, father, friend - gone just when life was the sweetest. Why? WTF is it all for?

On any given night when I can't sleep at 2 a.m., I can be found contemplating the meaning of life. I get up and start reading, researching, trying to figure out if I'm doing what I'm meant to do. Will Scleroderma allow me to mark most things off my Life List? Oh, and the Life List - 3 a.m. is the best time to add crazy stuff to the list!

The struggles of the year, feeling less independent, losing some of my own abilities, having a friend lose her husband ... have all taken a toll on my psyche. On the outside, for the most part, I have remained my normal self, with positive outlooks, attempting to lift others up when they need it, and maintaining my desire to forge forward on my path.  

Behind closed doors, in the wee hours of the night, in very private conversations with only the most trusted of my friends, I've been very different. Often asking WTF is the point of it all? 

I have been torn. Split between wanting to be the woman I used to be - who appreciated each new day and was always looking to get the most out of life and creating experiences or being the person who just lives everyday in a "whatever" state of mind and taking what comes instead of making things happen.

It has been a real tug-of-war trying to figure it all out. Last night, I was looking over some things I have written in the past for various organizations or events and stumbled across the answer. Below is a section from one of those writings. This was the answer and reminder I've been looking for.

Scleroderma has forced me to evolve and become a new woman. My old self is gone. 

Having this disease has completely changed my life. As I was preparing to undergo the drastic chemo treatment, I quickly became aware of and came to grips with the reality that most others don’t experience until much later in life – the reality that we don’t live forever; the reality that we don’t know what tomorrow will bring. Disease or no disease, I could be gone tomorrow. This disease or its drastic treatment could kill me or I could be hit by a bus. Either way, nobody is to know for sure what tomorrow will bring. I am ever so grateful to have reached that understanding at such a young age. 

The year of the chemo, Tim McGraw released the song, “Live Like You Were Dying.” It couldn’t have hit the airwaves at a more appropriate time in my life. I was starting to contemplate how I wanted to live ‘my new life,’ after all, I was being granted a second chance and I darn well better make it count! Tim’s song, coupled with Dr. Wigley’s advice of “live the good life,” and past life experiences now make so much sense to me: 

Your life, today, and tomorrow are gifts. 

Live your life with no regrets, learn from your mistakes, and don’t ever wish to change a thing or wish to have done anything differently. Everything that has happened got you to where you are today. We can’t be who we are without having been who we were.

Love with every ounce of your soul, if you give that kind of love, someone, somewhere will want to give it back to you. Giving that kind of love and getting it in return are an unparalleled experience. Even if it doesn’t last forever. Having the experience even once is worth it all. 

Enjoy life and all it has to offer. Travel, Sightsee, look at nature, find a way to do the things you want to. Do what makes you happy; don’t just talk about it – DO IT! If it seems impossible, find a way. My husband hauls (literally) me all around so that I can experience everything. Jet-skiing in St. Croix. ATVing through the rain forest in Puerto Rico. I can’t drive a jet-ski or an ATV, but HE can. He pulls me on, figures out how to secure me from falling off and away we go! I might be sore the next day, but a little achiness is FAR less than what I’ve been through before and worth the experience. 

Love and cherish the people that treat you well. Let the rest go. Their negativity and stress have no place in your life. They will make you sick. Our time is too short and too important to be wasted like that. 

Be grateful for all of life’s gifts – your life, your today and every tomorrow.

Having this disease can be difficult. I’m not going to lie and say that it’s easy. However, with lifestyle changes, the right doctors, and a good support system, it IS manageable.  THAT is one of biggest keys to living with Scleroderma - having the right group of doctors, loved ones, and friends on your team, in your corner, coaching and cheering you along the way.

THAT woman! I like her.  I like what she had to say. I like how she thought. I like who she was. 

Oh! Hey!  THAT was me.  That IS me.  It's time to get back to her!

Hello, 40! I see you out there. You're just a few months away. I'm coming for you. It's going to be awesome and crazy (good) and fun. It's going to be equally difficult and challenging and crazy (bad).

And that's OK!

Time to get back to persevering and rocking on!

💋  🤘🏼