Let The Stress Begin

There are a hundred, maybe a thousand, different things that run through your mind when you realize you and your partner are both simultaneously disabled, and not one of those thoughts are, "everything is going to be just fine."

That is an after thought. That's a thought that comes in amidst all the worst case scenarios, all the 'we are going to end up bankrupt and homeless" or "our poor child is going to be an orphan" when your mind is about to explode, bc it can't take the thousand alternate terrible possibilities. 

That is when a soothing thought comes through. Even then you know it's just to comfort yourself so you don't crumble to bits and have a psychotic breakdown at exactly the time you need to get your game face on and move full bore ahead for your family and loved ones. 

This is the three point shot at the buzzer to win the championship moment in life. Either you are in it to win it or you're not in the game at all.

Except with this being life, We all know what the stakes are. It would be easier to be paralyzed by the fear, curl up in a ball, close your eyes and pray for it all to be over. That's how you would lose. Its time to keep your mind right and definately start praying.

I've been popping ativan.

I know it is just Jon's

 achilles heal. We've been through far worse before. He saw Dr. Weiss at Valley Orthopedics yesterday that confirmed he has a partial tear. Based on the MRI we hope to get ASAP he could be having surgery Thursday.

It is a surgery that will take 3-6 months to heal from. Without the surgery there is a higher rupture rate and a longer (4-7 month) healing period.

The timing just sucks. I'm on my steroids so I can have happy bonding time with my family. We wanted to create memories together that would last all of our lifetimes. Now the roles have changed.

Jon is sitting on the couch, unable to move, and I am waiting on him. 

After I get over the grieving and the loss of all the trips we had planned to do while he'll be recovering, I'll enjoy waiting on him. He does take good care of me while I'm sick, letting me stake out in the sick corner, delivering me food, water and medicine, cooking dinner, and cleaning everything that bothers me.

Now it's my turn to care for him, and I don't mind at all. I like it. I just don't like that what could be my last period of health is not going to be spent having great times on vacations. It's not like we can say, "No worries, we'll just change the trips and do them next year."

Who knows what's coming next year?

With this on my mind I've had the week from hell. I've been hanging out a lot with my BFF, lorazepam.

My houseguests had just left before Jon came home injured. I have a full house to clean and no energy. God Bless Aunt Becky who will clean it for us tomorrow. I physically can't haul laundry to our basement machines due to my lungs and now neither can Jon.

I'm in the midst of writing grants for the Charlestown Police Department. It is something i had contemplated doing while I was ill. Less than a week ago my father said he wanted to apply for NH's Energy Efficiency and Conservation Community Block Grant which would upgrade the proposed new police department to an energy efficient one. This entails writing four separate grants one for the building envelope, one for the PV System, one for the solar hot water and space heating, and another for lighting upgrades to energy efficient fixtures.

Oh yeah, and it's due Feb. 15. 

I'm feeling the stress, and the only thought that has helped relieve it so far is canceling the family trip to NYC this weekend that we had planned.

We had only purchased tickets to see The globetrotters at Madison Square Garden. I think we can sell them. I just don't like the idea f leaving Jon alone at home when he is struggling so badly, especially to go do eents we were supposed to be doing together. It just wouldn't be any fun.

Hopefully we can reschedule it for the end of Feb. or spring when my mom has another conference (that's how I go on these luxury trips), and we can all enjoy the experience.

Maybe then I'll finally get my horseback carriage ride through central park.

CHAMPIONS!

You are on the official site of Charlestown Winter Carnival 2010's Broom Hockey Tournament Winners!

Yes, The Zambonies, after 8 years of playing have finally taken the coveted trophy home, and we all have our fingers, bones, joints, and ligaments intact!

We started off lucky having our 9 am game pushed back to a more Zambonie-friendly 11am time slot, which allowed us all to walk up at a leisurely pace before heading to the ice.

Did that make my friends from college on time?

Absolutely not, and I should have known. It has always been my responsibility to get them up and out the door. We may never have made it anywhere if I wasn't tapping my shoe, checking the clock, reminding everybody that we would have to PAY if we showed up after midnight or 1am, whenever ladies stopped getting in free.

Now it was me, hollering that we have to leave in 15 minutes, that no one will be able to see their hair underneath the cute hats of mine their going to wear, shoving kids in snow suits and boots, and trying desperately to squash the urge to leave them all because they don't know where they're going.

It would just be mean of me to have them try to get around the country by themselves. Take a left at the one yield sign where Charlestown ends doesn't work.

They can't even tell where Charlestown begins.

When Daisy and Co. came up for my wedding, I told her there would be an abandoned building on the left and to take the right onto Rte 12.

I received a very scared phone call saying they they had passed the barn that had been blown over. They thought they had gone to far, and EVERY BUILDING was abandoned here.

We showed up 15 minutes late, halfway through the first game, despite my best efforts.

Didn't matter anyway because we were up 3 to nothing.

I brought the sleds, and the conditions were icy, which means fast and furious. There were horse rides and a bonfire. It was smaller than in years past, but just the perfect size where you could socialize happily with everybody.

I didn't play. Not only did I not play, I stayed off the ice. The first time I stepped on the ice it was before our second game and I was determined to get a team picture. I was waving and yelling and nobody was paying attention.

Nobody was paying attention until I got on the good ice, took one step and fell flat.

Then everybody paid attention. The whole ice fell silent. People rushed to me like I may have shattered.

I didn't realize exactly how loved I was until I took that fall, and then I thought, "HA! Now, next time you'll pay attention so I can get my picture. Hehe."

I have such a great group of friends. I did end up getting a group shot after the game.

That first dinger didn't stop me from a celebration hop onto the ice during the championship game though when Jon got the winning goal with 2 minutes left off an assist fr

om Brynn. I was leaping, hollering, and feeling good from some mango margaritas when I decided to launch out and hug my husband the broom hockey hero.

To bad I missed and ended up falling on my knees again. Oopsy.

After that it was back to the house to the best group of house guests EVER. I wouldn't have even known they were there if I didn't keep tracking them down and forcing them to hang out with me. The numbers worked out perfect. Each family was able to get a room to themselves and share the second floor bathroom.

One family wasn't able to make it at the last minute due to car trouble, but another couple came up, claiming their spot.

It was so much fun having all of us together with out families after all these years as friends.

We met in 2001 at The College of New rochelle less than a month before

the towers got hit. We bonded all through college, through clubbing, dating, marriages, babies, failures, successes, near fatal

diseases, divorces, baptisms, major world disasters. You name it, we've done it, and we've been through it together.

I started to say I was so lucky to have them as my "framily" (friends that are family), but these girls can be even better than family.

I had the whole group here all weekend and not one entered passed the entrance hall in their muddy boots. One family member came later Sunday and trekked more mud through the whole house in two minutes than the whole group did through their stay.

How could I not love them?!

I'm a very lucky girl.

To celebrate the success we took a trip to Claremont's Super Walmart, which NH has but NYC does not, and spent a serious two hours checking out the goods.

Lexi got spoiled by her adoptive big sister Laurette with hair supplies and a long lesson on how to straighten and care for her beautiful hair. We all just want her to know she is beautiful inside and out.

We made it through the weekend alive and intact. The house guests had all left, and I was dreaming about Jon coming home from his basketball game to take over the kids we had here playing (5 of them including X) so I could nap when the door opens and in walks my father, sports training bag and crutches in hand.

The sports training bag was our go-to athletic emergency bag. It contains wraps, air casts, and a cryo-cuff, a special contraption that wraps an ankle or knee and then fills with ice to properly ice it.

Behind him is Jon, manuevering very slowly.

"What is this?" I stammered, confused. "Did you two plan to show up together? What's going on?" I asked.

"Well," my dad said, making that face, the face that says something has happened I don't know about, "It was kind of planned."

UGH.

"I tore my achilles playing basketball." Jon said, sheepishly.

"AAUGHGHGHGAAUUGHGHGHGH!!! M****F******, D*****, ****, ***

**!We just had to go back to being the family that just can't get a break!" my mind screamed. I took a breath. I tried to hide how pissed I was.

I'm finally healthy. I finally have the capacity to do things we enjoy together as a family. My lungs are already decreasing in function, and J gets hurt.

I'm having visions of our beautiful family weekend in NYC go up in flames in my head. Cancel the carriage ride through central park that I've been wanting to take since I was a little girl. Cancel the globetrotters game. Cancel the central park zoo. Cancel

the Waldorf where we can stay because my mom is a rock star big wig that gets swank hotels.

Jon needs surgery.

Oh how quickly things change, but we are still champions!

Luckily, I have a great friend who also happens to be an orthopedic surgeon.

Cheers to today

Smile, everybody, and say, "broomhockey!"

Yes, my ladies are officially here, having arrived starting at 8:20 last night to what we formerly called "The St.Pierre Estate."

Now that I'm married and my house consists full of Fords, I think we need to rethink the name of what what my friends and I have dubbed their country B&B.

Jon and I tried to post a road sign that said "Ford Tough Blvd," but that would only confuse the delivery guys.

I do try to make my home as "hotel-like" as possible. I want my friends to keep coming back.

The most exciting thing about this weekend is that we are all together, carrying on a tradition my father started when he was President of the Recreation Department almost thirty years ago.

Winter Carnival has changed since then but has succeeded in many shapes and forms.

Now my friends and I are carrying the torch.

These college friends: Colette, Laurette, Daisy, and Lauren (Maggie couldn't make it due to car trouble) are the same ones who supported me through college. Who gasped when they found out I was pregnant only to come back running with presents.

You never know who your friends for life will be until it is no longer "convenient" to see them, and these are my girls for life.

They cried when I was diagnosed with cancer and suffered through me dragging them shopping on Fordham Rd. and Canal St. to cope.

They ran to my bedside when the Doctors told my family that I would not survive my respiratory failure and coma in Feb. 2007 and stayed while I recouporated.

Their presence, jokes, and laughter were better than any medicine modern science could provide.

When I relocated to Boston for my trial study and second transplant, they all hoped in the car and came rushing to Natick when my sister and brother in law, along with Boston Scientific, Threw a fundraiser for my healthcare costs in 2008.

They were here last year for winter carnival despite having to take care of me when I came down with pneumonia.

Now they're here, again, with their partners and children. We're all grown up! We all grew up together.

I'm so lucky to have people to love and relate to and who will still keep coming back even after I force them out on ice in boots to do a silly New England sport that makes them look foolish while I take pictures and laugh hysterically on the sidelines.

Cheers to today.

Broom Hockey Weekend!

One of my favorite weekends of the year is here! It's Winter Carnival Time, and I'm well enough to play host to five of my friends and their families' from college.

Colette, Laurette, Maggie, Daisy, and Lauren are coming up with partners and kids in tow. I'm in all out suzy homemaker mode and loving it.

I'm Martha Stewart millenial style: budget wise, stylish, and sassy. I have 6 lbs. of grandma's meatballs made in her special sauce cooking in crockpots, one batch of chili, and a tex mex buffet with a six layer taco dip.

All of these will go so well with the mango margarita's I'm bringing out. The mango margarita test batch actually came out last weekend, and again last night. It's definately perfected.

Even better, the best news yet, I'm feeling good!

On big traditional weekends like this I always reflect back on years past and last year was a big old mess.

I'd looked forward to this weekend. I'd prepared. The house was clean. The food was here, and Friday morning I started to get an aura of pneumonia.

Yes, the pneumonia arau. It is absolutely accurate. I've had it enough times. I was not about to be hospitalized with my girlfriends coming up. I called around trying to get an appointment and some oral antibiotics at the local cancer clinic only to be DENIED. There just wasn't the time on a Friday for a patient that wasn't "technically" their own.

I belonged to Dana Farber.

Instead of being seen by a specialist, I landed at my good, reliable Primary Care Provider's Office. I love my PCP. He is always there and available when I need him. His name is Paul Matzkin. He's with Claremont Family Practice if you live in my area and are looking for care.

Finally, I got my antibiotics, but not soon enough. I spent most of the weekend sleeping.

At least my friend's snuggled with me.

I also tried to rush Lexi to her end of season basketball pizza party while sick and over medicated and ended up in a snow bank.

My jeep still has a dent from that snaffuu. Not from actually hitting the bank, but from my husband getting frustrated and putting a little dent in my car.

This weekend should go better, except I am now feeling a little overwhelmed.

For a while now Charlestown has wanted to consolidate their emergency services: the fire department, police department, and ambulance. There were no funds for a grant writer to obtain funds for the project.

Guess who can write grants? Yes, that would be me.

I have written one for Charlestown before which was received. It's one of my proudest accomplishments, and wanted to do it again.

Two days ago my father decided we should write the for a new energy efficient emergency station in Charlestown together. He does the engineering and the energy savings calculations. I write and follow the directions.

Great, absolutely, exciting, except it is due February 15!!!

I have a lot of work to do since the process requires that I write a separate grant for each piece of the project: 1 for the actual building, 2 for the solar hot water, 3 for the solar PV electric system, and 4 for the lighting upgrades.

Thank goodness for cut and paste. Please pray Charlestown can receive this much needed building to improve health care access.

I'm getting to writing now.

Taking on Fear

My lungs have started making their expiratory squeek, AGAIN, less than one week

 after tapering down to only 40mg of prednisone. 

For the first time in a

 while, I almost let the fear paralyze me when I was running amok, enjoying life, and my lungs began to squeek like a rickety set of useless rodent infested stairs. 

That's how I feel about my lungs. They're old, frail rickety and utterly useless if not meticulously watched. 

I'm scared regarding what could happen in the future, but I'm not scared now. Right now I can breathe. I have energy. The world is mine to conquer again and I'm going to conquer it. There is nothing to fear because there is nothing to stand in my way right now.

That does not mean that I'm not aware. 

It is plan for the worst, expect the best.

I always did wonder how people with diseases such as cystic fibrosis went through life knowing their time would likely be cut short, and why they did what they did.

I was always fascinated to see that they went to college and started careers. Most people continue to live life with disease on the side. This way, maybe one day they will die, but it won't have been without living first.

I like that. It's allowed me to make plans again.

For so long I wouldn't make future plans because the disappointment of canceling them was too much pain. Not anymore.

I'm trying to run about life and enjoy every moment I have with the anticipation that I will again become as sick as I was.

It's a blessing that I can accept the inevitability of my disability and prepare accordingly. I now focus on projects that I can hopefully sustain while I'm sick.

Every time I enter treatment or become acutely ill I lose whatever project or goal I had set for myself. I scramble to find someone else to hold together the pieces in my abscence. It's a devastating loss that happens alongside the disability.

I don't want that to happen again. I'm trying to create projects that will sustain themselves beyond me.

This has always been the goal, but I've never found an avenue to achieve it. I didn't know who to work with or where to go.

I'm finally making some progress.

I'm meeting today with some members of Sullivan County's American Cancer Society. They specifically work with Sharon's Hometown Fighter's and The Relay for Life.

This area has a great group of involved volunteers looking to ease the burden of cancer. I can't wait to brainstorm with them fundraising ideas, as well as pitch some of my own that they could maintain in the future.

Cameron Seimers Life Hope Grant

"A good friend is a connection to life- a tie to the past, a road to the future, the key to sanity in a totally insane world." -Lois Wyse

Isn't it ironic that the quotees last name is "Wyse." She must have been fated for knowledge beyond her years.

I borrowed this quote off of one of the previous winner's of the Cameron Seimer's Life Grants blogs.

This woman is AMAZING. She was glamours Woman of the Year in 2008. She has been published in multiple magazines while overcoming an askin's tumor of the spinal chord at 26 years old. You can read more about her at obsesedwithlife.com

I can now count myself among the ranks of these elite men and women who have won the Cameron Seimer's Life Hope Grant!

Cameron Seimers himself is a miracle. He contracted HIV at the age of 2 when he received a blood transfusion and was diagnosed five years later with the virus. He was told he wouldn't live past ten, and has been living with his disease ever since. HE is now 26 years old an runs the Cameron Seimers Foundation for Hope which allots grants to individuals living with life threatening illnesses who want to inspire hope and change within their community.

To read more about Cameron, and see if you're eligible for a life grant, check out www.cameronsiemers.org

I'm so honored, and have been living on cloud nine all week. It seems like things may finally be going our way.

The steroids have given me a new lease on life and the strength to again pursue all the things I love.

I am so blessed to have the love, support, and friends I do that have gotten me this far and

made me who I am. The quote above is for all of you.

I met with my heme team at DHMC on Monday. I look Cushingoid, which means my face is "moon-shaped" from the steroids."

I've been fending off the facial hair that comes alongside the prednisone with nair wax strips.

If my voice changes and I start to look like a lumberjack you know I officially need to taper more quickly.

I have been needing to take medications at night to keep me asleep, and I've been waking up early, but these complaints are nothing compared to the "I can't breath" or "I can't walk to the car without my lungs almost failing" problems I was having.

I'm keeping my days chalk full and have been working on my art as my personal therapy.

I'm also actively addressing some issues with Reliance Standard Co., My disability "insurance" company that hasn't paid me my income check since May and is now trying to purge me.

I'll give you more details on that as I am clear.

Finally, I'm loving the Cancervivor Art idea. I'm meeting with members of Sullivan County's American Cancer Society and Sharon's Hometown Fighter's Relay for Life Team tomorrow to see how we can make this a mutual endeavor, something that can continue should I become incapacitated.

Lots of good things in life. I'll keep you posted. Much love.

CancervivorArt Offerings

Check out Ebay this week for my latest endeavors latest offerings.

First things first: one long, multistrand, silver plated mother-of-pearl necklace measuring 15" at longest length with 3 strands of silver chains and one threded with varied mother-of-pearl beads.

You can view and bid on the item at
http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=120525423003&ssPageName=STRK:MESELX:IT#ht_500wt_1182

Second is a great corner wall shelf. Think Valentine's Day people. It's handmade, one of a kind, a would make a great addition to anybody's home decor. It measures 21"LX21"LX8"H and !" rack with. See this item at

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=120525416548&ssPageName=STRK:MESELX:IT#ht_500wt_1182

Last, but not least, and there will be more items to come, is an

other original wall decor shelf with heart ornamentation perfect for your Valentine. Measurements are 30"L X 9"H.

Both shelves are made by the loving husband and caretaker of a survivor. Please help support this wonderful family.

The item can be found at

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=120525419060&ssPageName=STRK:MESELX:IT#ht_500wt_1182

Save $300 a month for Life (From Vic)

Today is January 30, 2010. it is currently noon and 10 degrees outside. My solar hot water heater on my roof is currently 112 degrees. I have an 80 gal tank in my basement that is full of 110 degree water. ( a hot tub is set at a maximum 104). My Solar Photo Voltaic system is producing about 10-14 kw hours today. It isn't enough to run this house but the new energy star houses that I am selling it is enough.

Both systems qualify for the 30% federal tax credit. In NH the electric system qualifies for a $6000 state rebate. The net cost installed for both systems would be $10,000. Both systems are built to be added onto easily.

I am trying to talk My wife, Nancy into building a much better insulated and electric fixture home than we did 21 years ago. With the new technology of solar, we could reduce our electric, heating, and hot water bills. My current house has a HERS value of around 120, with out the solar. The new houses with solar as I have now is around 20. That means it would cost 1/6th of my current house for the same size house. To put it in easy terms.

I would save over $300/ month in energy costs!! For the rest of my life. More if energy prices go up.

If you are planning a move or building a new house please be energy wise. Houses should last hundreds of years. Spend the money in building a well insulated envelop. Now and in 2110 someone will still be reaping the benefits. The world will be much healthier because of it.

Please give me a call at (603)542-4915 or see my website www.5eaglesdesign.com if you are interested in learning more. A factory tour of Preferred Building Structures will really open you eyes. I will be taking more classes in February so that I can stay on the cutting edge of technology.