Thursday, September 8, 2011

Ten Years Gone

Here is my original post detailing the horrors of 9/11/2001 for me from the 5th year anniversary:

Here also is my blog post containt the 2996 Project links for our friend, John M. Griffin.

We will never forget you, John.

We will NEVER FORGET any of you.

People who didn't live in the shadow of NY or the Pentagon or even Shanksville, PA cannot know and truly understand the magnitude of how it was to live each day with the smell, the fear, the horror - and how it changed especially NYC permanently.

The Pentagon is fixed. The grass is regrown in the field in PA.

In NYC we still have a huge hole, a gaping wound in our skyline and our hearts that we bear each day. Even when 'something' is there in its place, it will never be our Twin Towers.

be well,

Tuesday, July 12, 2011

All She Wants To Do Is Dance

So, that is Pumpkin, now 14, graduating from 8th Grade, junior high, and stepping off into the world of high school...

In March we found out Pumpkin was not having growing pains in her feet, ankles and knees, but instead it was a form of systemic arthritis. Since then it is confirmed that Pumpkin has JRA, juvenile rheumatoid arthritis.

Of course, having me as her mom, there was a higher chance of it happening than if I didn't have the lupus etc. Sigh. How do you deal with that? Well, you don't really. You feel like shit. You feel guilty. You feel angry. You feel sad.

Then, you realize none of those emotions - and certainly not the 'blame game' is going to help anyone. Especially, not Pumpkin.

So, you shove all that down and focus on her and her needs, wants and desires and making her life as uncomplicated and easy as you can while coping with a chronic disease.

We have a great pediatric doctor. Her office is also fantastic and I am very happy with their responsiveness and help so far. Believe me - that is half the battle.

We address the symptoms by helping her cope with the pain and anti-inflammation via medicines and we address the disease directly by adding a DMARD (disease modifying anti rheumatic drug), in this case methotrexate. It suppresses her immune system so it will be more difficult for it to attack itself. I, too, am on the same drug once a week.

Pumpkin just started this bigger gun last week with a small dose and this week with her regular dose of 15mgs, and she has tolerated it well and I am happy to say she is feeling better.

Usually, it takes a few weeks for it to kick in, but a lucky few get instant relief. It seems she has been that lucky. :::knocking wood:::

In fact she is walking on the treadmill right now, second day in the row!

The road ahead will not be without its obstacles. However, I will be there paving the way the best way I know how.

I may not be able to bend the universe to my will but I WILL make it quiver a bit when it comes to my babies and making life right for them.

And when she wants to dance... she will.

be well,

Wednesday, November 3, 2010

Vote for me!!!

Hi everyone! Miss you and love you all! Been crazy busy, kids are good, hubby and I are good too!

Can I ask a favor... Can you vote for my picture to win in a contest? Here is the link... I am picture #2, the cat reading a Kindle, with the book 'Grave Witch', which is AWESOME! Thanks!


be well,

Saturday, May 29, 2010

Since (I've) Been Gone

Wow, so much has gone on in the last month, and yet, so much has not happened all at the same time. Strange that. Very strange.

Bringing you up to speed... The biggest news by far is that my boys had their Eagle Scout Court of Honor... picture above. They have about 10 plaques and 30 plus letters each from local, state, and national organizations, current and former presidents, vp's, senators, governors etc. It was a really moving ceremony (altho 95 degrees in the school gym) and afterward we had a nice party back at the house!

The Eagle Scout ceremony was the at the end of a string of consecutive weekends of camping and the HUGE spaghetti dinner fund raiser that the Scouts do and my Hubby chairs. And, the Monday right after I went away!

Mom and I went to Atlantic City for her work. This was my 4th May conference with my mom. It was nice. We enjoyed ourselves and I came home with $100 more than I left with! Always a plus! We had nice dinners and fun playing poker machines and lots of slots.

Unfortunately, my health didn't cooperate fully during any of this and by the time I arrived home I was a mess.

Full lupus flare, with the whole peripheral neuropathy thing going on. That is pins/needles/numbness and pain. It was down my entire right side. From the tip of my head to my toes. I have spent the last week tossing and turning, and resting.

I have been experimenting with my meds and with self medicating with a little wine/beer/or liquor to help me sleep. Normally, I wouldn't do this, but I am waiting to get into the new rheumatologist in July. Ack.

This weekend, Memorial Weekend (kudos and thank you to all in the service, past and present) we have nothing much to do. Tomorrow, the boys are heading in to NYC to see the Fleet Week ships and then we have a family BBQ to go to.

Coming soon we have a combination Scout trip and family trip to the Inner Harbor, Baltimore. My dad is coming too (mom and my bil Uncle K will be home) and we are trying to get to a game at Camden Yards on Friday night, Saturday is Fort McHenry, then Hubby and the kids are sleeping on the USS Constellation with the troop. The ship was a former slave ship before being commandeered for the Navy and becoming a war ship in the Civil War and after. Then, Sunday we want to go to the National Aquarium. It is awesome. We visited in 2001 and the kids barely remember it.

As you can imagine, having the Lupus acting up is not going to mesh with the Baltimore weekend plans.

Enter the PREDNISONE. Yes folks, this will be my third round of the dreaded stuff since the holidays. It's a love hate relationship... it works, but the long term side effects are not good. Even in the short term a taper makes you a little nuts, but I need to do it. I need to be in better shape to push my body for the trip.

Things have been hard. Very hard. Lots of tears, lots of frustration. Lots of pain and not enough meds to cope.

It is hard realizing that I am probably not going to be able to do all the things I thought I would do. I want to travel, see the US and Europe, Alaska, Australia. Probably not going to happen. I want to see my grandchildren and do awesome stuff with them... I can barely do stuff with my kids, so that is probably not going to happen. I thought I would go back to school someday for fun... probably not going to happen.

I often feel I am not enough. Not good enough at being a mom, at being a wife, at being a daughter. Lots of little comments and jibes from family seemed to be repeatedly driving that point home. Why isn't this done? Why can't you? Why are you too tired? Why? Why? Why?

They know why. I know why. It sucks for everyone dealing with this chronic illness/disease/pain.

It's been hard.

Yesterday, I was having a particularly bad day and my dad handed me a box. He said it was a Mother's Day gift he bought me but it was on backorder and just arrived. It is a gold heart with rose and a ruby. On the back it says, 'My little girl yesterday, my friend today, my daughter forever'.

Needless to say I was overwhelmed. Lots of tears.

Maybe, life isn't that bad. Maybe the fact that I am blessed with the love of my parents and Hubby and kids is enough. It is has always been enough for me, but...

... even more importantly, maybe I am enough for them. Maybe just maybe.

Hope this finds you well...

Tuesday, April 27, 2010

Viva la Vida?

A very important list for those with Rheumatoid Arthritis, and/or Lupus, and/or Fibromyalgia. (aww hell, for any of the auto-immune arthritic diseases)

How not to Cripple Yourself

1. Do not scrub your bathroom tub tile walls until your hands can no longer hold the brush, and your back appears to be stuck in the bent position for the bottom half.

2. Do not do wash in the middle of the night after a long day.

3. Do not do a lot of writing and errands the next day, forgetting that sometimes the swelling and pain takes a while to set in.

4. DO try to hide the fact that you are crying in frustration and pain for hours and hours.

5. DO take pain killers before you get to that point.

6. DO text/talk with someone who understands and asks the right questions and doesn't say dumb things like 'It will be ok.' (Uncle K, thank you)

7. DO hope/pray/light candles etc that you will get an appointment soon with a new rheumatologist since you really don't like the one you have now.

8. DO go for the yummy! ;-)

9. DO play silly computer or iphones games to distract yourself.

10. DO remember that it won't be ok, but it will get better than right now.

be well...

Thursday, March 11, 2010

Thankful Thursday

I have so much to be thankful for, so many blessings.

However, today, I am in pain, tired and weepy.

I hate that.

So, I got up, took my morning meds, got dressed, ate some food and took a vicodin (which I hate to do), drank 2 coffees, drank an orange juice, checked emails, and crackbook, er Facebook, I mean, and now, I am here.

Weepy because I am so blessed. Weepy because I really wish I could ENJOY my blessings more.

Today lupus/rheumatoid arthritis is kicking my ass.


1. Coffee. Thank you, Juan Valdez. Green Mountain. Keurig.

2. My kids. My life. My heart. My reason.

3. My parents. Dad's 70th Birthday was yesterday. We had a surprise dinner for him on Saturday night, just adults, with my cousin Karol and my sister/bff Kathy. He is their surrogate dad in many ways and they wouldn't miss it for the world. It was nice. Last night was dinner out with the kids and Uncle K, who couldn't make it on Saturday due to work. :-)

4. Reading. Oh how I love to read! AND, I am so blessed that my kids ALL have the reading bug too! YAY!

5. Tonight, Fuzzy will have his Eagle Scout Board of Review... and he should be elected as one with no problem! The big public ceremony will be in May and he and Hammer will have that together!!! I am so proud!

6. Libby. She is snuggled on the floor right next to me as I type. If I get up, she follows, and then reclines near me, wherever I may go. Nothing like a dog for loyalty!

7. The cats! Oh the fun they are having with mylar balloons from dad's birthday floating about! They are so funny!

8. American Idol. I enjoy watching it each season. By extension, I am grateful for music. It is just such a wonderful gift and part of life. It can help lift you up, pump you up, express love, hate, frustration or fun!

9. Piano. I love listening to Pumpkin play piano! She is so gifted... and doesn't get it! LOL

10. My friends. Thank you, your support means the world to me. Truly.

be well...

Wednesday, March 10, 2010

Wordless Wednesday

Going to cheat today and say...

Happy 70th Birthday, Daddy!!!

Tuesday, March 9, 2010

Blaze of Glory

Fuzzy finished his Eagle Scout project this weekend. Phew!
Stay tuned tomorrow for a Wordless Wednesday picture that will highlight his efforts!
Warning: Mommy braggin' below! LOL

Fuzzy collected items over a two week period at 3 locations Mon - Fri and 2 locations on Saturdays. (two schools, and police station)

In addition to 2 huge boxes of items, also collected was over $420.

Who is to receive this windfall?

American soldiers in Iraq and Afghanistan.

Regardless of your personal feelings about the political reasons/situations that resulted in our deployment of these soldiers - they are there. At the whim of our government, putting themselves on the line every day. They deserve our support, and if we can give them a little comfort - that too.

The Letter from Home Program at will be the liason between Fuzzy and the soldiers.

I am very proud of my boy.

This Thursday will be his board of review, and barring any unforseen difficulty, Fuzzy will become an Eagle Scout at that time, soon to join Hammer in the formal presentation at the Court of Honor in May. :-)

Fuzzy has had a very rough month too, after just getting over an ear infection in January and injuring his leg/knee with an almost break and tearing the ligments, last week he was sidelined by a bad cold that went straight to bad bronchitis and asthma flare up.

This week he is completing the final Eagle Scout Project details, making up school work, arranging to make up NJ State school testing, and serving our township in Youth Month! The students who volunteer are assigned two counterparts in the municipal government. One is a township employee, the other is a member of the Mayor and Council. Very cool opportunity. Fuzzy and Pumpkin are both participating this year!

Tonight is a meeting of the Planning Board and Fuzzy will be attending.

My youngest son and middle child is maturing into a fine young man.

I will tell myself that over and over as he gives me that teenaged rolled eyes face and says 'I knowwwww' everytime I try to remind him of something.


be well...

Thursday, March 4, 2010

Thankful Thursday

How did I do three entries last week and miss Thankful Thursday?

A good question, for which, I have no answer. :::hanging head:::

:::perks up:::

But, I'm baaaaaaaack!

1. Coffee. Oh yes... yum.

2. Asthma meds. For Fuzzy. Very thankful indeed, because my son would not be able to breathe and might be one of thousands of children each year who die in asthma related deaths, usually because they are not being treated for it. (just one shameful aspect of our stupid healthcare system)

3. My husband. I have been going through a particularly difficult time of late for a variety of reasons that I am not going to recount here and now. Suffice it to say that much of it is relating to coping (or not) with chronic illness/pain. ALSO, suffice it to say that I have been, at times, difficult to deal with. I know, I know, hard to believe (:::snicker:::) but true. Hubby has been WONDERFUL and patient.

Except for the one lapse where a smart ass comment sent me careening out of the house in the truck, in my jammies, to McD's, but I won't hold that against him. Or mention it again. I don't think. :::shrug:::

4. Uncle K. He won't read this as he is computer deficient, but one of my kids will probably tell him, THANK YOU for being a good friend.

5. My parents, as always, for all their help.

6. My kids. The reason I put up their picture yesterday for my Wordless Wednesday post is because they are MY LIFE. MY HEART.

7. Our quirky humor and family life.

OMG, you have to hear this... too funny. So, Pumpkin Muffin was being told this joke that had to do all this math. She got each and every answer right and quickly, then at the end she had to 'QUICK, name a vegetable!'

Her answer: Banana!

Yep, that's my Distiguished Honor Student! Just brings a tear to your eye... as you realize our future is doomed!!! LOL

8. My friend Donna, a childhood friend, that I have reconnected with on Facebook! After many email conversations, we are getting together for coffee tomorrow! YAY! :-)

9. Books. This week I have read, Kalayna Price 'Twice Dead', Jane Austen 'Sense and Sensibility', Stephen Coonts 'The Disciple' and I am reading Mark Henry 'Battle of the Network Zombies' (for free on kindle this month!). The latter has had me laughing out loud so hard, I had tears rolling from my eyes! (A warning though, the book has graphic language, violence and sex - all done hilariously, but it wouldn't be everyone's cup of tea!)

10. American Idol! Not sure who is my absolute fave yet, but I am enjoying it!

Okay... time to go! Pumpkin Muffin will be walking in the door any second and will demand all my attention to discuss her day prior to starting homework!

be well...