Scleroderma Day

The first World Scleroderma Day was inaugurated in Europe on June 29, 2009. In February 2010, the first Systemic Sclerosis World Congress was held in Florence, Italy, where it was officially decided that June 29 would be recognized as World Scleroderma Day. Within the past three years, the day has grown to include observances in Australia, Brazil, Canada, Europe, India, the U.S.

Rep. Capps, along with Rep. Peter King (R-NY), is an original sponsor of H.R. 1429, the Scleroderma Research and Awareness Act. This bipartisan legislation would work to intensify the research into scleroderma by the National Institutes of Health.

Last Thursday, Rep. Lois Capps (D-CA) read a statement in the U.S. House of Representatives to recognize Scleroderma Awareness Month. “Given the unpredictable progression of the disease, scleroderma, like many other autoimmune diseases, is difficult for medical practitioners to accurately diagnose and even more difficult to treat as there are currently no disease specific treatments,” she said. “As we recognize the need for awareness of this troublesome disease, we can and must do more for the thousands of Americans who are diagnosed with this condition each year.”

Ode to Nellie

Ode to Nellie

To gain weight, you invaded my belly
You kept me up at nights
Your tube was always present, flush, flush flush
I've only worn yoga pants since you arrived
I never did gain weight.

Out you go. Maybe it would have gone better if I named you Peg.

Glorious Days

For those of us living in South Jersey, the weather has been simply wonderful.  I've enjoyed every moment being outside, seeing my sister Kim and her kids and meeting up with my childhood friend, Nancy.  What tipped the scale towards perfection was my sister, Leslie's effort to get me to the beach.  She got a chair.   Not just any ole' wheelchair but state of the art dune buggy chair.

This is her son, Kyle modeling (with delight???) the dune chair.       

                                  

Once settled in a beach chair, I felt like a kid at Christmas.  But first, I insisted Leslie take my picture in this chair.  Who would believe that this is me at the young age of 61.  Yet, this day, I felt 31, although a far cry from it.

What a babe!  Part of me wants to start singing "Memories".  The other side of me, tosses that to the wind and savors the sand, the sun and ocean.  "In and Out"

Is That Your Final Decision?

What a question that we all face at some point in our lives.  Marriage, Mortgage, Surgery...it's tough.  Some of us just know their answer.  I, on the other hand, have to take time to think it over and over.  Actually, that's not true.  I would say no without second thought to sky diving and a big yes to a million dollars.  I, digress.  Today, I sent my withdraw letter to the transplant committee.  The experience of going through this process is unforgettable.  I'm struck by the number of people that reached out to share their experiences and give me advice.  Thanks to cyberspace, I learned a great deal.  I feel a sense of relief now, the decision is made.  None of us know what the future brings.  We want to plan it, control it and have it come out our way.  Well, we know that's an illusion.  So, acceptance and good effort sounds like a better way to go.

I'm not sure if I should keep my blog going at this point.  (decision making) It wouldn't be the drama of the last couple of months, at least I'm hoping not.  On the other hand, I've enjoyed trying to put a humorous spin on what otherwise is totally depressing. It's helped me deal and I've been encouraged by those that read it.

It was great to get home on Friday and load up on more medicine.  It turns out that the bacteria in the blood is listeria.  Atlantic County Disease Control called early this morning for this a bacteria has to be reported.  Wow!  All I could think of was Hoffman in "Outbreak".  They asked me lots of questions.  Most of my answers...Shop Rite.  ''They" speculate that it was from Turkey deli meat.  Who knows for sure.  People on immune suppressants drugs can't fight off this bacteria.  And, the beat goes on.  Here's what the little suckers look like:

The good news is I am feeling better.  The second good news, you didn't share a turkey sandwich with me.

And Back Again

Once again, I've taken up residence at SMHospital. This time, pneumonia and bacteria in the blood. Since the odds of being put on the double lung transplant have grown slimmer, the odds of my body being able to make it through surgery and recovery and after a great deal of contemplation, I've decided to refocus. My team agrees. That means that I go back to managing symptoms and living my best life. It's not giving up, for me, it's how I want to spend the moment I am in. I wonder if it's age that helps you realize how precious that is. Or, has it been living with chronic disease or the teachings of some great spiritual leaders? Maybe it's a bit of all these. It's not giving up, far from it. For me, it's doing the best I can do to be present now. First thing, the feeding tube will be removed...23 more ounces of fluid a day!! I'll keep plugging along with trying to gain some strength and endurance. And, savor my moments.

Up and Back

These last few days were wonderful.  The sun, the breeze, low humidity made it a delight to get out on the deck and go for walks.  Nurses, Doctors and Physical Therapist in between but that took 2nd place.  Yet, lurking just below the surface, the rising fluid level.  So today, breathless and fatigued, I spent most of my day in and out of sleep.

A new protocol in place, the fluid should be reduced without another hospital visit. I've finally learned to surrender to the snooze button.
Still, It's discouraging, when you're trying to do it right but...c'est la vie.

Tomorrow, I'll be jazzed for a .5lb. reduction.

It'll be a week tomorrow since I've been home.  Nancy (aka Schnance) watched over me until Friday when my caregiver arrived.  If you've been following my story, you know that the most unusual things can happen.

When Mignon boarded her plane to return to Santa Monica, little did she know that fate and a 4-hour wait on the tarmac would lead her to her meeting Bill,  who was returning home to Phoenix after having spent a month with his father in hospice.  He happened to be sitting in the same row as Mignon, in the middle seat directly to her right.  As it neared sunset, the airplane cabin grew dimmer.  Mignon was reading. Bill reached over to turn on her overhead light and thus began a conversation that took them all the way to the end of the tarmac ordeal and onto Arizona. Among other things, he told her about a live-in caregiver named Tina who had stayed with his father for the last thirty days of his life. "Tina is part of our family now," he told Mignon. He gave her the contact information for the caregiving agency in Pennsylvania that he'd called.  In fewer than twenty-four hours, Mignon was on the phone from California with that agency's owner, Kari, who impressed Mignon with her caring, understanding, and generosity.  Her sincerity came across to me too when I spoke with her myself last week. She told me she had a caretaker available whenever I was ready.  Within a few short days, Kari was driving from Lancaster County in Pennsylvania to the Jersey shore, bringing with her my caretaker. That caretaker's name? Tina.  The very same Ghanian woman who'd helped Bill, Bill's father, and Bill's four sisters. The serendipity of all of this did not go unnoticed by myself, my family, and Mignon.  Meet Tina...

...a Ghanian beauty seeing the Atlantic Ocean for the first time.  Wahoo!

Tina has been such a big help.  I wouldn't have been able to manage in "heaven" alone.  The issues and worries are still there but I'm home.  Now, instead of staring at a poster from a hospital bed, I'm spending time sitting outside on my  deck and looking forward to visits.  In fact, rumor has it that Dr. Nancy, my friend since 2nd grade, will be in this neck of the woods soon.  The doctor appointments,, diet and fluid restrictions, weakness and all the rest seems more bearable.  So grateful.