The Sort of Hope Who Gets Flushed

Welcome to November~November happens to be RSD Awareness Month! I kicked off awareness month by getting flushed.


For those new to my blog, I am sick.  For 12 years I have had a disease called RSD. (reflex sympathetic dystrophy). I am currently receiving regular treatments through an amazing Dr in Philadelphia. This treatment requires regular access to my veins. It is kinda/sorta like chemotherapy but only for what I have.  ( I do not have cancer most people associate ports with cancer so I always feel the need to over clarify this. )  RSD is a disease that affects the central nervous system. It changes the way my body works. It is different in almost everyone who develops it. It predominately affects skin, joints, muscles, bones and sometimes impacts the way the internal organs function( like it has with me). It’s most common trait is severe burning pain. Constant relentless burning.

My port is to make my life just a little easier. A little less painful. My port requires routine maintenance to keep it functioning properly. The maintenance of this port is referred to as a “flush”. It always makes me giggle.  (what it’s called, certainly not the flushing itself, as it involves the insertion of a needle and as far as I am concerned, that is *never* funny.) I go to the Infusion Suite at the local hospital since they have been kind enough to save me the 55 miles that I normally travel to my doctor  just for this literally 2 minute procedure. The nurses and staff at the Infusion Suite are probably some of the greatest , kindest people I have ever had the pleasure to deal with. I always feel badly about taking them away from the very sick people there and they never make me feel like the inconvenience I go there feeling like. My Dr and  I decided I needed a port because my veins kept blowing. Also because IV’s are painful and every time a person with RSD gets a stick somewhere, it is a possibility that their condition can spread or at the very least, cause the condition to flare up. Getting a port was probably one of the best decisions I have made for my own healthcare to date. I had my port inserted right before my first 7 day inpatient Ketamine Coma over 2 years ago which was another great move because I wasn’t really awake to feel any post surgical pain until over a week later.

Most of the time I forget I even have a port. Until I see it. Or feel it. Or bump it. My daughter is somewhat fascinated by my port. She is one of the only ones who seems to ‘like’ to touch it. She likes to feel the “straw” that is inserted up into the main artery into my neck. She’s an odd child.

My port is not without it’s own issues, though. Somehow, out of all the port insertions, in all the operating rooms, mine falls a little short. Literally. Because of that, it has trouble giving returns. The “straw” ( catheter) that is supposed to go into the main part of my heart is just a fraction too short. So while it works to give me my treatments, ( put things into me) it doesn’t often work for blood return, as the catheter sometimes randomly floats between the main ( big) vein              ( artery? ) vein, (I think) and the smaller one right next to it. I can’t really think about it or it freaks me out. Something is randomly floating inside my heart. Ya, cool.

I had a port buddy. His name was Kerry. He used to tease me that his “3rd nipple” was better than mine because it had more holes. ( he had a fancier sort of port). Sadly, the world lost him a few months ago after his valiant fight with cancer. We used to talk about being sick together all the time. He was one of the few people who I ever actually truly talked about being sick with. We discussed how we hated it, our constant struggles, how we hated what it did to our families and how much fighting we did with ourselves. He truly “got it” . I miss him. He was feisty. I loved that about him.

I both love and hate my port. It has saved me countless sticks. But when I do see it, or bump it, it serves as a reminder that I am not who I once was, I am now RSD Hope. And RSD Hope has to get flushed.

The Colorful Sort of Hope

“Rainbows are visions, but only illusions,
and rainbows have nothing to hide.” ~ The Rainbow Connection ~ Muppet Movie.

Who doesn’t love a Muppet?

I’ve had a mad-crazy inter-species crush on Kermit for as long as I can remember. A frog with a great sense of humor, who can sing, strum a banjo and be confident enough to not wear pants. That’s the guy for me.

I owe today to my beautiful daughter, Natalia who never lets *me* hide no matter how bad the going gets and who never fails to bring color into my life.

I will always treasure the laughter that we shared today.

{And to my friend who exists only in my computer, I hope you find the end of your rainbow someday too, it sounds ever so incredibly decadent. -Thank you for reminding me to look.}

“Who sees the human face correctly: the photographer, the mirror or the painter?” ~ Pablo Picasso

do it while you can, kid.

just passed my very sweaty 16 year old son post work -out in the hall on his way back  up to his room…

protein shake in one hand and 2 bags of doritos in the other. not sure if he is trying to gain muscle or confuse it.


~ teenagers…

It’s difficult , sometimes, living in this house of amazingly fit super successful athletes. My son is a baseball player ( guess you figured that out from the photos) . My beautiful daughter is a competitive gymnast since the age of 6 , now a Level 7 for USA Gymnastics and also a recent addition to the world of HS Cheerleading.

Nick is now 16 and Natalia is 14.  and I’ve been “differently abled” since falling down the steps when Natalia was just 2 and he only 4. Spending 2 of their toddler years on crutches being shuffled from dr to dr to seek the most current form of treatment for a then little known disease called “RSD” aka Reflex Sympathetic Dystrophy. At the time of my injury, I worked full time at a large local Hospital in Human Resources in a job I was certain I would retire from.

Housewife/stay at home mom is a role I never wanted yet somehow found and embraced nonetheless.  When I was forced to give up the career I loved more than anything, I made the decision that I would put all the energy and passion I had for my job into my new role. I decided that my new “job” would become being the best Mom that I was capable of being. Remember, my children were 2 and 4 at the time. Staying home seemed the scariest option in the world to me. How could days filled with messy, loud kids possibly be as fulfilling the place where I went to to escape this loud, messy, chaotic home?  In a blink my life went from working 45 hours a week,- power meetings with CEO’s and the like, teaching Sunday school, and starting a business to cooking, baking cleaning and coloring. It was a huge adjustment and one I never thought I’d have to make. At first it was difficult. I missed grown ups. I missed the fast paced, packed calendar I kept at the Hospital. But slowly strange things started to happen. My children started to teach me how to live. I learned the beauty of a butterfly, of a fall leaf, or the amazement a cracked sidewalk held. I learned the joy of a bottle of bubbles. I took an interest in cooking and began to delight in the responses I received when I got it just right. I discovered parts of Hope I never knew existed. My children have slowly begun to teach me who Hope is.

The Sort of Hope Who Takes Her Own Picture- {self portraiting}


Self portrait-ing was something I began when I started an interest in photography. I usually lacked willing specimens and found I was often the only living thing available. Cell phones, Web Cams, still working on getting it right with my real camera.It never mattered , just wanted a photographic history of who I was for mostly my own sake but also so my family would have a record of me “just in case”.  It then became a little project for me as my disease progressed.

It is my hope that you can also view these as I intended. Just photos. Potential art. Face value. I welcome your feedback. Good or bad.

These are some of my favorites. Favorite quotes. Favorite moods. Favorite edits.


“I can no longer think of anything but you. In spite of myself, my imagination carries me to you. I grasp you, I kiss you, I caress you. A thousand of the most amorous caresses take possession of me. ” ~ Honore de Balzac letter to Evelina Hanska June 1836

“Those sweet lips. My, oh my, I could kiss those lips all night long.” ~ Jess C Scott- The Intern

“Thou art to me a delicious torment ”  ~ Ralph Waldo Emerson

[T]hen I did the simplest thing in the world. I leaned down… and kissed him. And the world cracked open. ~Agnes de Mille

“Licence my roving hands, and let them go

Before, behind, between, above, below”  ~ John Donne

“Don’t wish it were easier. Wish you were better.” ― Jim Rohn 

“The eyes are one of the most powerful tools a woman can have. With one look, she can relay the most intimate message. After the connection is made, words cease to exist. ”
― Jennifer Saliz