Rare Disease Day

To call attention to rare diseases, today has been set apart as rare disease day. It is a jean wearing day and supporting the causes you believe in, and I believe it was being promoted by Facebook.

My good friend, Duch, lost her granddaughter  Leah to Epidemolysis Bullosa, a disease which people who are aware of call the poor children afflicted by it( meaning EB, for short) “Butterfly babies”, as their skin is constantly breaking down at even the most light of touches. My husband’s niece, Dawn, and her daughter Kayla, both are in hospice care suffering from Mitochondrial Disease. My good friend Ivana’s Mom is suffering from Scleroderma, which is a disease that I lost my Aunt Jennie, who was my godmother, to.

It is very easy for people to lose sight of what is good, and complain about things that “bother” them.

It’s a good day to count your blessings and support, in whatever way you can, those who are suffering from diseases that are, in a sense,  eventually killing them. Hopefully cures are being worked on to spare patients and their families the pain. Also, please take a minute to hold up a prayer  or good thought for those who are the caregivers for those suffering for those rare diseases, along with the patients. It’s a long haul for everyone.

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Feeling a little blue

 

….and I came upon this sign.

 

This church is down at the “Undisclosed Location” and we pass it on a daily basis.

I have been weathering a lot recently, Mom, and then Jim and his shingles,and just couldn’t seem to shake the malaise I felt.

I saw this sign and thought to myself that truer words were never spoken.

This Thursday, the first of March, will be 19 years since I have been clean from my first cancer. Yup. NINETEEN. Through radiation, chemo, radiation implants…..NINETEEN.

 

Malaise, whatever….I am grateful to have two feet ON the ground.

 

Back where I started

I am returning to the scene of the crime this morning.

My current Gyn/Oncologist moved from center city to the far Northeast . Dr. Charles J. Dunton , who treated this almost stage three gal 19 years ago, has graciously agreed to take me on again. He left the city a long time ago, and is now affiliated with Lankenau hospital.

Successfully being treated for cancer and ever- mindful of the fact, it feels like I have come home. A lot of the staff have been with him for a while.

Here’s hoping for a good visit.

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Sunday morning coming down…

The title this morning is one I stole from the Kris Kristofferson song.

We are still going through Jim’s shingles, but despite everything, we are low key this morning. We went for Mass and then walked the beach for a while in Cape May. I couldn’t walk on the beach at the cove, as the storm from Friday took a chunk of the Cove beach.

We are savoring the peace and quiet, and the girls are waiting patiently for a walk.

Enjoy your Sunday!

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Lube & oil

So I am down @ Undisclosed, looking like a Herman’s Hermit. Fortunately, I have an appointment with Diane, my stylist at Cuttin’ Edge hair salon .

My mom always hated the fact that I colored my hair. My buddy,Liz, started doing it for me at 33. I was just diagnosed with cancer and she had said I was to young to be do gray. I was fortunate to find DI an Cuttin Edge here at Undisclosed …I get a little me time on the weekend , and leave feeling a little better about me!

Who can ask for anything more?

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Status of ths Shingle-man

Here is a shot of Shingle-man, aka, my Jim, who was playing guitar last night when his Mom and sister were over to pay us a visit. They figured since he is past the contagious stage, it was worth the trip. It was really funny because although he was not quite as miserable as he has been, they could see the difference in him was the medicine was kicking in. We both were sleepy, and we are not talking midnight, here, folks, we are talking 8P.M. My Kasia is sitting by her boyfriend, Daddy, waiting patiently for Mom to take her and Zush out for a walk.

We are leaving mid-day for the ‘Undisclosed Location”, as our feeling is it is just as easy to feel lousy there, but there is something about being out of the city that makes it all a little better.

Have a wonderful weekend!

QV- wait-and- C

I live within striking distance of the QVC mothership in West Chester, Pennsylvania.

I ordered the item pictured below back on Valentines’ Day.  I am a December birthday and absolutely adore my natural birthstone, which is turquoise. Green turquoise, blue turquoise.. I am a big blue-green gal.

Every time I order from QVC, I usually get something within 2-3 days. and that is stretching it. Usually I get it within 2 days. So when QVC promised delivery for February 22, I thought,” Oh, ok, no mail on President’s day so probably I’ll get it Tuesday.”…no…Wednesday…no….

I know, I know…when you really want something that you have ordered, it can’t come quick enough. Funny, though,that basic items, such as Denim and company, or Clarks’ shoes, come within two days. I mean, all of a sudden you would think I live in Alaska or something. But what’s funny is I really liked it, but then I was reading about it, and am anxious to see the quality of it. I have heard some people were less than happy with it, so it’s like, to return it? keep it?…

Like I said…

QV-wait and C