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.

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

This Year”s Ash Wednesday birthday ? ZUSH!

It’s Ash Wednesday today, and as one of my co-workers wrote, giving stuff up for Lent to give you permission to act like a sphincter for the rest of the year.( roughly paraphrased)

I was thinking about that. Yes, I am Catholic, born and bred, but while thinking about what my buddy Anna said, I realized how true it is. I am not talking about people of other faiths, mind you, but people who I have known for 28+ years. Yes, I know I will go for ashes today, and like to think I am not THAT bad of a person BUT I know things I do the rest of the year, well, in retrospect, it’s like why bother with the ashes? I know a co-worker who religously gives up sweets for Lent. Well, not me. This year I am going to just try to start from within to try to clean up my act, and if I manage to find some happiness there, then I’ll try to pay it forward.

On a lighter note…

My Zush was born 11 years ago today.

We got her at six months and “my little human in a fur suit” has been the light of my life from day one.

Sto Lat, Zush!! ( that’s may you live 100 years in Polish)

Red Eye Special

Jim was convinced that he was tired enough to sleep last night, and he would have if the scratching from the shingles would have let him Fortunately, as we were at “Undisclosed location”, there is a second bedroom, complete with bed, so I managed, much to Jim’s chagrin, to get cozy and catch a couple straight hours sleep If that’s wasn’t happening, there’d be hell to pay!

We got up at 3 am and managed to finish packing to come up What I find so amusing is that neither of us wanted to come back up to the city-usually it’s me, but this time it was the both of us, oh,yes, and the girls included, as Kasia can run outside and get her ya-ya’s out, and Zush just loves the water.

Either way..we’re back!

Day off for us both

We are wrapping up a wonderful stretch of time here @Undisclosed, and hate to leave.

Jim had the morning off from his deli job, so with the rest of the day? It was awesome!

Pups were always walking, and I managed two days walking 4.2 miles a day with my neighbor friends. We saw friends and tried to relax and just hoped Jim’s pain gets better.

Hate to leave- can’t wait to be here full time!

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Apple addict

My Jim accused me of being an addict this morning-an Apple addict,

I used to use a HP laptop, but was so frustrated by all the anti-virus stuff and basically was up to my window panes dealing with the Windows OS. Jim bought me an power Mac book for this birthday that passed. Using it for work and writing, it is a wonderful experience after dealing with Norton and the like. The IPhone, which I got to help me back in caregiving days, has been a Godsend. Back in the day, it saved my sanity many a night. After being a Droid user for a bit, I happily embraced the IPhone.

So yes, Jim, I do love my Apple phone & laptop… But love you above all!

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If only

The increase of Jim’s medicine has not really kicked in yet. My morning was partially occupied with washing a load of towels, as hot showers seem to be the only relief he gets.

He did help me as I made chocolate covered pretzels this afternoon. I went with my buddies on our 4.2 mile walk this morning, and the girls are worn out from the walking we have done so far.

Now, if only Jim felt better…..

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Greetings from an Undisclosed Location…

..Where, for the first time since Mom has left us, we’ll be down here for a three-day weekend.

It’s an odd feeling, knowing that we don’t have to rush back for the city on Sunday night, in anticipation of Monday. Don’t worry: there is plenty of sleep to catch up on, walking for the girls, wash to do, yarn to knit, and my walk with my neighbors to the ferry in back. There is actually anticipation of a snowfall on Sunday, which took me by surprise, as I saw the weather saying we were only due rain here at ” Undisclosed.” It just makes things interesting.

Here’s hoping you are lucky enough to have a three-day weekend and no matter what, you enjoy each day to the fullest.

Wish a shingle was only for a roof.

Jim’s shingles are a new experience which, quite frankly, I wish I never bought a ticket for.

I love my husband. Really.I do

Coming off of care giving for Mom, at least with Mom you could figure out how to make her comfortable. In a sense, it was basic care 101.

Shingles? Hah.

My friend Kate has been holding my hand through this and the doctor actually responded to me this morning but, **shaking my head** I just don’t know.It’s as though the Bermuda triangle has hit and we can’t seem to pull ourselves out of it. I know I can’t make his pain go away, but at the same time, I can’t seem to even help make him comfortable. It is a very frustrating situation that I find myself in. The doctor called with a basic increase in medicine this morning, and perhaps that’s the ticket. I hear from people who had relatives who had it and how badly the pain affected them and, quite frankly, I get scared. Cancer hits, you know you are losing control of your body.When possible, you do everything within your power to rid yourself of it. Dementia hits, the scariness is that your mind is going. Shingles, that damn dormant chicken pox virus, lies dormant, comes out with stress, bites you in the butt and seems to suck the life force out of you. It is truly an “E” ticket ride.

Me? Well, I’ll keep on keeping on, keep working the beads, and looking for only the “A” ticket rides.

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February slump

I always loved winter:it was due, no doubt to my December birthday.

My buddy,Juls, from mid-state, is coming up on the anniversary of her Mom’s death. My Mom’s passing is fresh in my head. My buddy from the office just buried his Mom. All winter events…you can’t help when things happen and people pass.

There has been no big snow, things are hanging in, and unfortunately, I am finding myself in the midst of February blues. Jim having the shingles, no doubt, has not been a highlight here.

I had picked up three pots of old bulbs from my Mom’s front yard and the hyacinths are forcing their heads up, along with my tulips.

Come on spring!

 

Happy St. Valentine’s Day

It’s Valentine’s day!

Zush and Kasia had a good morning walk with their Mom. Kasia is out front standing guard and Zush is hanging with Mom until she leaves for work. I am savoring a good cup of coffee, and getting ready to leave.

If you are your own valentine, or have someone as a valentine- no matter what, savor the day! I even got my valentine some chocolate.( not that Jim will eat it around me)….

Enjoy the day!

…and if you happen to have a birthday today, like my friend Duch, more so the better.

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Empty handed again, in a manner of speaking…

So whenever I get a chance to escape to “Undisclosed Location”, I usually pull my USB cord, which I use as a phone charger,in the office. Over the weekend, I optimistically take it with me, thinking I am going to upload stuff from phone to laptop.

Well, guess what is not in my bag this morning, but home on my dining room table? You have it, my USB cord.

So here’s a heads up to all my words with friends associates, and others: pardon me if I might actually use my phone as a phone today. I might not be as speedy as you wish with opposing words on the game board. I do think that the actual phone usage might be a little more important. I promise you, I will charge up as soon as I get home….

Honest!

Wellness has a price…

Walked with an Undisclosed Location buddy today from our meeting spot down to the channel,which Jim has ball parked as 4.6 miles round trip. I feel really good , and a hot shower later, well, I think a little back and body Excederin are in order. I feel really good, but a little achy, so I think this might  be the ticket.

Walking down here calms me and clears my mind. I have two good buddies who I walk with and with Jim getting better, well, the girls have been getting good walks from Mom, so it stands to reason that I’d be less sore than from the beginning.

It’s good to be in motion again.After four years of classical bad diagnoses of torn meniscus and $80K in titanium knees later, I am coming up to the one year mark of my surgery. Best thing I ever did, or should I say, had to do.

 

 

 

 

Simple nervous tension?…

…C-O-M-P-O-Z…

anyone beside me remember that commercial? I think it was on the radio a lot.

I have had a really bad stress headache perking for a bit, so today’s breakfast of champions is…

Here’s hoping that the need for the two are minimal this weekend and some meditation saves the day. Hope you all have a wonderful weekend and be well!

Genevieve, meet Veronica

Three weeks ago, Jim and I were down at the ” Undisclosed Location”, and traveled to Our Lady Star of the Sea Church for Sunday morning Mass, as  we are known to do. It is a beautiful church from the 1800’s with a gorgeous marble altar.

A good friend of ours usually is in the pew before us with his Mom, and we sit with them.

After Mass, his Mom turned to me and hugged me and gave me condolences regarding my Mom, and I had said that I am short a Mom: she said she would be happy to fill in. We laughed, kissed and said good-bye.

My second mother was found unresponsive by her son last weekend, and rushed to an area hospital. The prognosis was not good, and I was feeling so bad for my buddy, for as the old saying goes, I had been there and done that.

As I got off the train this morning to come into work, I got a call on the cell. For a moment, I thought it was a caregiver checking in for my Mom and then realized those days were gone.

It was my friend, who told me of my “second” Mother’s passing early this morning.

 

I was fortunate, in that I got to know “Mother Genevieve:” over this past summer in particular, as she had been ill and needed communion and I am a Eucharistic minister for my church., so I was able to bring her or send her son a host to bring to her. She had lost her dog a year ago, and Jim and I would bring the girls over and she always got her dog fix when they came with us for a visit. She had come over to the “Undisclosed Location” with her son, and I am glad she made it over to see it. We saw her over at 5 guys, coming in to order a burger. We laughed, as I poked my belly and said something to the effect that you don’t want to end up like me. She laughed and said that they were so good, it was worth it

My “two” Moms are now together in heaven…boy am I in trouble now…lol..no, strike that: I know that I have two good women up there on my side. I’ll be sleeping well tonite.

 

Food Network Magazine, are you KIDDING me?

Oh yeah, dinners under 500 calories…great article for me, right? After all, I subscribe to their magazine….you know, the one that is screaming “The Chocolate Issue”!!!!

  • 50 Brownie recipes
  • chocolate chip cookies, chewy, crispy and more
  • win chocolate for a year
  • and, least I forget, chocolate covered EVERYTHING( like bacon,complete with a picture of chocolate covered bacon)…..

Now, I know I am a big girl and everything and you are not a light recipe magazine ( I mean, come on now, the new darling of the diabetics, Paula Deen and her Mile High Pie on the cover), but can’t there be a happy medium somewhere?

Just sayin’….

Another day

Off to the most scenic area of the city **read heavy sarcasm here**to perform my job. Fortunately I am going to be with my boss, as no one should be going through that part of the city solo.

The girls got a really good walk through the woods with Mom this morning, so hopefully they will be tired out until Daddy comes home later. Jim’s rash seems to have disappeared in the back, and the shingles are working their way  back down the food chain.

Here’s hoping that a page has truly turned and maybe the household will be going on an uptrend again,

Needing some loving today

 

Having a rough morning after a rough weekend at home. I can honestly say the highlight of my weekend was watching the Puppy Bowl on Animal Planet.

I was going to upload a picture of the excederin bottle to really give you a picture of how the caregiver is feeling today, but figured I’d stay positive and show you Zush’s baby sister, Kasia, who usually gives me this look when I come in the door in the afternoon, alleviating any need for Excederin.

I love my girls!

 

Wearing Red today..

..since it is the day to call attention for Women’s Heart health. In addition, I am giving blood today too.

 

I find that women probably have the strongest hearts that I know of. How many times can we have our hearts broken and yet still rally to pull everything together?

Seriously? Take care of yourself. Take care of your heart. I am trying to drop the weight to help my heart, with the help of my nephew Greg-he is my strongest cheerleader.

But take care of yours, ok? I am glad you are able to read this entry and would be sad if you weren’t.

Dear Dunkin’ Donut Customer Service

Do you train your staff?

Really?

Don’t you pride yourself on how nice your products look?

Today, I ordered a chocolate iced coffee roll **yes I know, but it was a grieving, comfort food thing** and proceeded to watch you place the roll with your thumb smashing it into the paper and icing and then have the lack of respect even more so for the product by putting icing side down in the bag. Yup, brown DD bag, upside down coffee roll icing, coffee roll and bakery tissue. I mean a fourth grader with practice would give better customer service than that.

Think about it DD, and maybe train your staff. Hey, you might make money and make as much as Starbucks…how about that!