John's Story

Co-Enzyme Q10
B-12 Lozenge
Acetyl-L-Carnitine
Lactobacilli Non-Dairy
L-Glutathione
Burdock
Chamomile
Milk Thistle
Green Tea
Bromelaine
Peppermint Oil
Vitamin C
Vitamin E

This is a partial list of the supplements John takes every day. Over 100 pills a day. These supplements cost us an average of $120 per week. He also takes a line up of prescription medications. The co-pays for those? Plenty.

As I mentioned in my previous post, he also sees a naturopath once a week. The cost for that visit? Another hundred. Plus the cost to drive 3 hours one way every Friday, grab dinner on the way back...

Add to that the cost of at least 2 or 3 additional doctors' visits each month. Let's just say that we will have no problem reaching the threshold to deduct medical expenses on our taxes this year.

But the value of John's health? Priceless.

In honor of John's birthday today, and for all of you who asked or expressed joy over his improvement: here is his story.

Two months before Giuliana was born, in October 2007, John started to feel a sharp and stabbing pain in his abdomen. We had no idea the cause of it. It literally came on suddenly, in the course of an afternoon, and has never really gone away since then.

At first we assumed he must have been having some sort of acute attack...gall or kidney stones, something like that. Blood work and ultrasounds showed no cause for the pain. After a few weeks he developed a high fever and was in agonizing pain. He was admitted to the hospital and diagnosed with hepatitis A. He was treated for hep A and was released from the hospital a week later. Still in pain.

Over the course of the next year, while taking care of a newborn, John had procedure and test after procedure and test. He had his gallbladder removed. He had a GI procedure called an ERCP that ended up causing acute pancreatitis that left him hospitalized for 2 weeks with a central PIC line. Two weeks later he was back in the hospital to have a stent left over from the ERCP removed and that ended up causing him to be in the hospital another week.

We saw doctor after doctor. Primary care, gastroenterologists, communicable disease specialists, endocrinologists,  psychologists, psychiatrists, anesthesiologists. Countless emergency room visits. Up and down, back and forth, good days and bad days, but no diagnosis, no cure. Always pain.

Eventually, in early 2009, we exhausted all the local doctors and resources. We had tried going up to Syracuse, the closest "big city" but had bad experiences there as well. So, we moved on. We went to Albany to see a neurologist, nada. We were referred to a GI specialist in New York City. It meant leaving our daughter with family, driving down to New York, spending the night with John's aunt in Brooklyn, a long day in the city and another long drive home. They did tests, they tried new meds. It still didn't help. They referred us to an anesthesiologist in the City. He was great and really tried to help. Medications, patches, electrical stimulators. Some of it helped, to a point. But, still, the pain was always there. John took 3 long leaves of absence from work because he was just unable to function. Back and forth, good days and bad days...

By spring of 2010 we were spent. We did not know where to turn. He was hoping to be able to attend graduate school in the fall, but honestly, it looked quite doubtful he would be able to handle it. We were coping day to day, it was tenuous. He still wasn't able to work a full week most of the time. He had no endurance. His energy and reserves were used up and his body was just plain tired from being in pain.

John began to see another psychologist to try to learn to cope with the constant pain. After a few weeks, this psychologist said, "you know, I know this is going to sound crazy, but I see this guy in New Jersey and the only way I can describe him is as a 'miracle worker.' I would like to call him and see if he would meet with you." John came home and we discussed it. "Miracle worker?" I asked incredulously? Really? I googled the man, Roland Ramos, and his office, Hands of Care. Nothing. People were telling us this guy was world famous, worked with celebrities, cured people of stage 4 cancer. But I couldn't find him on the web. I was skeptical. John was skeptical. The psychologist told John the next week, "I called him. He is not accepting new patients. His practice is full. But I explained your situation and he is willing to see you. He will make an exception for you." Another long discussion at home. Should we try it? No way this was going to be covered by health insurance. Who was this guy? The psychologist described him as having "energy" in his hands. He touched you and you could feel it...warmth and healing. Sounds, weird, right? Yeah. It did to us, too.

We really had no other options. It was either go see this guy, reservations aside, or keep the status quo, which was barely maintaining us. So, without much hope that this was going to work, we went in May 2010. We left Giuliana again to spend the night with her grandparents, and made the 3 hour trip to Harrington Park, NJ after work one sunny afternoon. We stopped at a rest stop along the way and spontaneously decided to have 2 chocolate ice cream cones. That turned out to be John's farewell to both chocolate and ice cream...but we didn't know it at the time.

I'm struggling with how to describe to you our experience at Roland's office. I don't want this to come across sounding hokey, or like we found some sort of Messiah or modern shaman. But Roland truly does have a gift. I don't even really know what to call what he does. He's a naturopath and uses herbs and supplements and natural healing methods. But he was also previously a hospital administrator. So he knows modern medicine. He does a lot of talk therapy, but he's not really a psychologist or a counselor. He does incredible energy work with his hands, but I don't know that it's actually reiki  or anything similar. He just does what he has been given a gift to do, and it works. He's also physically not what you'd expect. I was picturing some youngish middle-aged hippie, tall and thin, with long hair, maybe birkenstocks, definitely a crystal hanging around his neck. Nope. He is an average looking grandpa type. Favors argyle sweaters and a comb over. No crystals.

So we arrived. The office is a beautiful and cozy complex on a quiet side road in the middle of suburban New Jersey. There is a gorgeous landscaped koi pond in the parking area and a peaceful meditative garden filled with gnomes. The office is a part of Roland's house which is show-stoppingly beautiful. And it all works together to create a peaceful and healing environment. Still, I was skeptical when we walked in the door.

Roland had John lay down on a massage table. He told us he uses his hands to heal and not to be alarmed if John felt a very warm sensation as he touched him. He also looked John dead in the eye and said, "You are going to be healed. I have no doubts. It might take some time, and you have to do everything I say, but you will be healed." Ummm. Ok.... I didn't know what to make of that statement. John and I both described his pain and the ordeal he'd been through over it. Roland listened and asked a few probing questions but mostly he moved his hand over John's body, about an inch above him, concentrating on his abdomen. All of the sudden he yanked his hand away as if he was pulling something out of John's body. Roland never touched him, and John had his eyes closed. But John's whole body physically jerked and he let out a little yelp. Roland told him to be calm and just continue talking. Roland kept sweeping his hands over John's body concentrating on his abdomen and his head, every so often jerking his hand away. Everytime, John jumped. It was eerie.

After several minutes of this, Roland stopped John. He told him that he had felt, through his hands, that John has a very severe allergy to milk and milk products. He told us that this allergy was eating John's stomach and intestines up and they were filled with toxic by-products. He said, "let me guess, you love to drink milk...probably chocolate milk, am I right? And you eat a lot of pizza with cheese, ice cream, cereal?" Hmmm. Yes, yes, yes, and yes. He said, "you have to completely cut out dairy. No milk products. None at all." This was probably one of the worst things, in John's opinion, that he could have said. John looooooooves chocolate milk and drank gallons of it. He is Italian, so most meals include something dripping with cheese. A bowl of cereal is one of John's comfort foods, what he turns to when he is in pain and needs to eat but can't handle anything heavy. Not anymore, according to Roland. And he made this determination without a single test, scan, or scope.

Roland told us he wanted to meet with John once a week for a while until they were able to get things under control. He gave him a list of supplements to take every day and again stressed completely cutting out milk, along with, for the time being, beef and citrus, to give his stomach a rest.

The drive home that evening was interesting. We had a long talk about whether to give this a shot or not. I mean, how could he possibly know that John was allergic to milk without doing any tests? But what about that weird energy work he was doing? John said he could feel his hands moving over his body even though Roland wasn't touching him. He said he could feel his pain welling up and concentrating under Roland's hands, and when he pulled his hands away, John could feel energy and pain pull from his body. He said when Roland held his hands over John's head, he felt peace and relaxing energy. So we didn't really know what to make of it. My advice was, you've tried everything else and nothing has worked, why not give it a shot? If it doesn't work, what have you really lost? But maybe there's a chance it will work. And I also said, "if you decide to do it, you have to really do it. You have to listen to him and do everything he says."

And he has. For 9 months now.  He takes all the supplements. He found a carob rice milk that staunches his craving for chocolate milk. He hasn't had cheese, ice cream, a bowl of cereal or any other milk product since that last ice cream cone (including chocolate! I couldn't do that!) He is just now adding beef and citrus back into his diet in small amounts. And it's worked!!!! In the first 2 months John dropped 25 lbs. He said he could feel toxic sludge leaving his system. He has been able to cut back on the prescription medications he takes and his goal is to eliminate most of them over time. He is completely off of narcotic pain relievers. He is able to work and play with Giuliana and help me around the house (we even scraped and painted our garage this summer which was a huuuugggeee project. He never would have been able to do that 2 years ago.) And he is going to grad school, something else he wouldn't have been able to handle before. He is enjoying life again.

We continue to see Roland once a week. It's still a long trip to make, but about 6 months ago we started taking Giuliana with us so we didn't loose so much time with her each week. She loves going to "Dr. Rowand's" and is an absolute angel on the trip. She occupies herself for the entire car ride, mostly looking out the window and talking to us. She has made friends with the people in the office and feels at home there. And she looks forward to our dinner date afterward, often ordering her own food when the waitress comes to the table :)

And I have turned into a believer. This guy, as weird as it sounds, really does have a gift. He is a miracle-worker. We have met other people who he's worked with, people who have recovered from multiple sclerosis, stage 4 cancer, thyroid disorders and chronic pain. Roland, Dawn, and Lisa are becoming family. The office is like a welcome respite each week.

This sign hangs in the entrance hall at Roland's office. It sums up the feeling and atmosphere there pretty well, because the healing Roland does is not just physical, but spiritual and emotional as well. John still has a ways to go, there is still break through pain now and then. But the transformation has been amazing. I am more grateful than I can express.

Reflections

My little family has survived another week.

That's about the only way to sum up our crazy life lately.

I went to work 14 hours this week. Giuliana had both pneumonia and a severely acute (no, that's not redundant or hyperbole) double ear infection. John had electrical devices implanted in his back. I've taken to providing a sound track for him every time he moves: "na-na-na-na-naaa," ala The Bionic Man. (Google it, I'm old. I know this.)

So, what, you might ask, is life like with an acutely sick toddler? Oh, let me tell you. For one, I am on Nick Jr. OVERLOAD! She hasn't had much energy for playing, so the TV has been on pretty much constantly. I couldn't take it anymore and called for TV-Free Day today. I got my wish for the most part, with a concession to my headache. I let her watch Sesame St. On Demand while I napped on the couch. Also, for two, the whining? It has hit all new levels. A two year old with a fever and a constantly painful earache is rarely happy. And lets you know it. She screamed at me because she wanted to do everything herself. Then she screamed at me because I wasn't helping. Then she screamed at me when I tried to help. Lather, rinse, repeat. For 2 WEEKS. For three, remembering to dose this child with Tylenol every 4 hours for her fever, Motrin every 6 hours for her pain, 2 different antibiotics every evening, homeopathic ear drops, fill her sippy cup with juice on demand (which felt like every 5 minutes) and heat her "nice pillow" (one of those microwavable corn pads) for her ears every 10 minutes just flat out wore me down.

But all of that pales in comparison to having to hold your daughter down three days in a row while she sobs and pleads with you as the nurses puncture both of her little thighs with a painful dose of antibiotics. Or lying in bed with her fevery little body smooshed up against yours, sweaty and shivery, as she thrashes back and forth in pain you really can't do anything about. Or the terror that grips your heart when you pull the thermometer out and read the temperature- 104.5. That can't possibly be right, can it? Strip her down to her diaper, give her cool juice. Sit and sing and pretend you're not freaking out. Coax her into a bath and lean over the edge and hug her while she cries and shivers and grips you tightly and generally breaks every inch of your heart. Or making the decision to allow the doctors to place your precious child under anesthesia and lance her eardrums.

Yeah. Those. Those are not good times. Especially when those things coincide with your husband traveling 400 miles round-trip to have surgery on his back and have electrical leads places on his spine. A trip you were supposed to take with him, to help him, to talk to the doctor and get the straight story. A trip you ended up having to skip and trust his father to get the straight story while you sat at work for 8 of those 14 hours worrying and fretting.

But, we all made it through a very long and unenjoyable week. John and his dad drove down to Manhattan early Thursday morning and made it back by 12:30 Friday morning with wires running from the middle of his back to a device he carries in his pocket. He dragged himself out of bed again at 5:30 AM so we could take Giuliana to the hospital for her surgery. And today, we've all caught up on our sleep, no one had a fever, medication regimens were much less stringent, and Thank God the TV was off. The whining subsided throughout the day, there were more giggles and less tears. Next week. There is hope for next week to be much better than this week.

****************

I thought I was finished with this post. I sat back and re-read it. And a horrible thought occurred to me. My little family survived another week. There are many families that didn't survive this week. They weren't anticipating not seeing each ever again. They didn't get to comfort each other. Some didn't even get to worry and fret over each other.

My little family survived another week. For that, I am blessed. For that, I am grateful. For that, I'll take what life hands me. Just as long as we all survive another week. Together.

Another Frightening Look Into My Brain

I’m not saying that I’m OCD or anything. But I love me a good, ol’ fashioned obsession now and then. Don’t you?

Past obsessions have ranged from major life altering events: “Here Comes The Bride,” “Let’s Buy A House,” “BABY! Baby, baby, baby…” To smaller time-suckers: “This Old Blog,” “Our Gross Yard,” “What Color Should I Paint The Living Room?”

My current, post-Halloween, obsession has become “Planning Giuliana’s Second Birthday Party.” I am a planner, you see. And I’m a little disconcerted that I only have 4 weeks to plan. But I have been living in denial of the fact that, yes, indeed, this kid is going to keep having birthdays. So, it snuck up on me. There are invitations to pick-out (obsess, obsess, obsess…) buy, fill-out, send. A birthday party dress splurge on (check! Did that last night.) A cake to agonize over decorating (I am not a baker, I just play one in my kitchen.) Decorations to make (I am, however, crafty.) So much to do! At least, there is if you live in my head. I think my husband is wishing that he didn’t. Live in my head, that is. I like to torture him by sharing all my obsessive thoughts, at all hours of the day and night. For example, this morning, as he was getting out of the shower and toweling off, I walked in and described, in detail, my ideas for using paper plates as hanging decorations. Lucky guy, my husband.

A “theme” has also been checked off the To Do List. We decided on that a couple of days ago. It was actually John’s idea. I asked him to think about Giuliana’s favorite things and list them off to me. There were the usual Elmo, Abby Cadabby, Dora ideas. But I don’t like the idea of using doing a character theme. Then, he hit upon the perfect one. I’m not going to share it just yet. But, for those of you who know my little girl, when you see it, you’ll understand.

Geesh! Look at the time. I should be googling cake decorating tips! Oh, and working. Gotta go!

Phishing Trip

John and I left Giuliana with her grandparents and headed out to Darien Lake last night. It was a 3 1/2 hour drive there, a 5 hour drive home (4am, you are not my friend) but it was so worth it.

We made the trip to see Phish. This was my first time seeing them in concert. John has been to several in his younger (hippie) days. They were every bit as awesome as all the hype. Even 15 years later. Unbelievable, really. I did the "hippie dance of freedom" as my sister-in-law likes to mock it, and enjoyed myself immensely. I am feeling rather old today, in that apparently 4am-9am does not equal enough sleep for me to function properly at 33 years old. Thhhhpppppp! I will not age gracefully!

However, in my old age, I do have a quick comment to make about one particular observation I made last night. It is this: I love music. I want my daughter to grow up loving music, and so far she seems like she is on that path. I love seeing little girls dance around in circles, enjoying fantastic live music. But I DO NOT think that a Phish concert is an entirely appropriate "atmosphere" for young children, if you get my drift. Right next to us last night were 3 young girls, ages roughly 3-7, and one INFANT (couldn't have been more than 3 months old) with their parents. The girls had a fabulous time dancing and playing. But the air...it was not clean. I was all sorts of uncomfortable about this. I do not fancy myself very judgmental of other parents, but this type of concert is just not a good environment for kids. What were they thinking? There, I've said my piece.

Anyway. Some pics. I did not include the unbelievable gridlock that had us sitting in a literally unmoving car until 1:30am. I don't want to remember that part.

This Is What I Live With

Guest Post today featuring a completely random and insane email my husband composed this morning to send to The Bugle, a podcast by comedians John Oliver and Andy Zaltzman. If you don't listen to this podcast...you should. Hi. Larious. Every week, among other interesting tidbits, they read emails sent in by their listeners, an admittedly odd bunch.

Dear boys,
I am sending this note off to you as fair warning that I am planning on contacting the authorities about what I believe is your terrible secret. I recently re-watched John's stand up special and took closer note to one of the things he said. John said he spent 2 years on another planet, which most of the audience took as a joke. However, I also went back and listened to #64 Appendage, at which time death threats were still being sent in. But, after his "hiatus", there were no more death threats. I believe John is using those who have threatened him as pawns for the alien race to experiment with, as part of the contract he made during those 2 years. John, while you may feel justified in sending those who threaten you to the agony of the alien's probes, it is downright mean spirited and petty. And Andy, you are equally as evil as John for those God awful puns you subject us to every week. Please, have mercy. I realize the likelihood of my surviving this unmolested is equal to cricket becoming the national pastime of the United States and taught to all of our school children from the age of 1.47 years on. Move on Andy, I'm not going to Warne* you again. Good times.

Comments on the subject matter may be directed to my husband, John. He's the crazy one. Words of sympathy and support may be sent directly to me...his long-suffering and loving wife.

* Editor's note: Shane Warne is a renowned cricket player. No one but Andy Zaltzman would get this reference.

"Dinner" at IHOP

Starts off well. Coloring with Daddy. Sweet :)


Yum! Does that look good or what? She was all over it the second it arrived!


And then this is what she ate. That's right. Exactly nothing. Oh, well, excuse me. She ate the five grapes in my fruit cup and a hand full of cheerios from the stash in her diaper bag.


And this is how she ended up. Sigh.

Breaking

This week has been filling up the way most weeks have been lately. It started off pretty mellow. Monday didn't look too bad. There were phone calls to make, appointments to schedule and keep...places to go, people to see, that sort of busy.

Tuesday was sort of awful. Giuliana lost it when I dropped her off at my parents' house. Full-on tears, pouty lip, wailing. I cried all the way to work considered turning around, picking her up, calling into work, going home...but I didn't do it.

And the week just filled up from there, as it always does. Wednesday was department meeting at work. We were going to be discussing an important issue, had to be there. Yesterday we had another big, important meeting that I couldn't miss. And my sister-in-law, who works with me, had her work bridal-shower. Not to be missed!! Today I had another meeting that I scheduled. Tomorrow is full of shopping for party decorations and attending another party for two of my favorite people on the planet. Sunday is Father's Day. And everything will begin again on Monday.

And what has G's week been like? It has been typical, too. Lot's of time at Grandma's. Little time at home. Rushing, rushing every morning, every evening. Rushing with mommy to the store. Rushing with mommy to the store again. Meltdown over leaving Daddy Thursday morning.

My life is becoming too busy, too full for my comfort. I haven't taken any time for myself, for my daughter. There has been plenty of time off, unfortunately. Just not the right kind. Time off for many, many doctor's appointments here, there, and everywhere. No time to just relax, to just enjoy each other, to play.

So, today, I felt a migraine come on. I cancelled my appointment. Called into work. John only had to work a half day. G and I stayed home and played, watched tv, cuddled, ate, enjoyed. I napped while my kid napped. We are getting ready to go on a family walk. I don't even have to make dinner tonight, John said we can go out.

Tomorrow is another day. It will be busy. Full of Things To Do. But today I just couldn't do it. I couldn't keep running. Today I needed a break. It was well worth it.

"Just Like Your Mother..."

Somewhere, deep in my heart, where the doubt and fear couldn't touch it, I always knew I would one day have a daughter. Yes, I went through mild panic and anxiety around age 30 that I would not be able to have kids, that my body would deny me and betray me, that I would run out of time. But deep, deep down, when I pictured my future, and didn't let those fears intrude, there was always a child, a girl, in my life.

I would picture myself combing long hair into pigtails.

I could see myself getting the bride ready for her wedding.

I envisioned myself elderly, talking about important lessons I wanted to pass on to my adult daughter.

The moment I found out I was pregnant I knew in my heart I had my daughter, at last. I never once thought I was carrying a boy. I just knew I was meant to have this girl.

I don't know if I will have any other children. I think there may be one more meant for our family. I still have those fears that my body will not cooperate again, that it will yet deny me. And if it is not meant to be, if it doesn't work out, it's ok. Because I have been blessed beyond words with this beautiful girl. The girl of my heart's dreams. She is forever mine.


And, boy oh boy, is she mine. Her personality takes shape and becomes a little stronger every day. And, uh...it's becoming evident that, in a lot of ways, she is just like me. In fact, John finds himself telling Giuliana, somewhat chagrined, that she is acting "just like your mother" several times a day.

To John's dismay she is not easily distracted. Just like me. He tries to tickle her while she is coloring and she squirms and giggles, but keeps right on coloring. Hmmmm.

She is becoming very particular about where things are "supposed to go." I have noticed that she and I are at odds about where a particular candle is "supposed to go" on the front porch. I move it to the window ledge. She runs right out and moves it back to the little table. I wait till she's not looking and put it back on the window ledge. She seems to have radar and runs out to put it back on the table again. Uh oh.

My mother has remarked how she seems to be a fearless adventurer, as I was. She will tromp bravely through weeds taller than her head, dash through mud puddles without hesitation, and climb whatever she deems climbable.

Giuliana had her 18 month check-up today and came to work with John and I this morning. I brought her crayons and a coloring book to keep her occupied, her new favorite thing. When I returned to my office later in the day, after the doctor visit and dropping G off at my mom's, I noticed a stray crayon on the floor. I picked it up and put it with my purse so I would remember to take it home with her other crayons. John walked in a little later, noticed it, and asked why I had a crayon. "Giuliana left it," I said, "I have to take it home. Blizzard Blue, it's an important one." John replied, half jokingly, "well, she'd notice if it were gone. If she's like her mother, she'd notice." Exactly.


These similarities make me laugh, and they make my heart smile. There's no denying her, she's mine. I know that someday, because we are so much a like, we will probably butt heads and drive each other crazy. I know there will be a (long) time when I will NOT be her favorite person. So I cherish each silly mommy-like trait that I see today. And I love that I am one of her two favorite people right now. I will always be so thankful that I have been blessed with this child, my daughter. It was meant to be.

Tag! You're It.

This weekend John and I played a rousing and exhausting game of Tag-Team Parenting. It went something like this: G is playing happily, but under the surface, not unlike an iceberg, there is lurking a screaming, whiny, over-tired almost 18 month-old. Soon, the calm breaks, the storm rolls in. Whoever had been entertaining her most recently tries to hold down the thunder to a dull rumble utilizing any means possible: singing, tickling, Blue's Clues...whatever works. When that fails (as it inevitably does) the tag happens. "I can't take her screaming at me anymore, you make it better. Thanks."

Why wouldn't she nap this weekend? I tried valiantly both days. She caught about 20 mins in the car on Sunday. N-O-T-E-N-O-U-G-H! To top it off, we were at a friend's BBQ on Sunday, with other peoples' family, people who had never met G before. She's cute. But that only gets her so far. I'm afraid she didn't make a very accurate impression of herself. (Sorry Colleen!)

Thank God I have someone to hand her off to when I just need a break! What do you do when all your excellent parenting skills fail at the mercy of an exhausted toddler?

I Thee Wed

April 30, 2005. Not really the beginning of our journey. More like the second chapter. But the day we will forever celebrate as the anniversary of our love, our commitment, our family, and one hell of a party!

John and I have already been through a lot together. It seems weird to me, actually. You know how, as you get older, time seems to speed up, going faster and faster till you just can't figure out where it all went? I got married to John when I was 27. It feels like, oh...5 minutes ago? We have been together for 6 years. And it seems like a blink, a flash, a nano-second. When I was a bit younger 6 years seemed like AGES of time. Now, I still feel we are just getting acquainted. Yet, I know him, and he knows me, better than anyone. We anticipate each other's needs and thoughts. We literally finish each other's sentences, say things at the same time, pick up the phone to call while the other is dialing...we are One. Yet we are still very individual.

He likes Coke, I like Diet. I like onions, he likes olives. He plays guitar, I sing. I am fastidious...you get the picture.

He is my true soul companion. He is my rock, he keeps me grounded and I help him fly a little. I am a lucky woman. I have found the one my soul was searching for. That's more than just a cheesy cliche (in fact it's a Bible verse that was printed on our bulletins) it is the truth. I was searching in a quietly desperate sort of way. And he found me. And he waited for me. And I was smart enough to allow him to take my breath away.

If you haven't found that kind of love, keep looking. I promise you it's out there.

By My Side
-Ben Harper

Don't you get ahead of me
and I won't leave you behind
If you get unhappy
show me a sign
There's no love like lost love
and no pain like a broken heart
There's no love like you and me
and no loss like us apart

Promises, promise is
only a word
and when softly spoken
is never heard
And a heart
is not a stone
and is fragile
is fragile when alone

By my side
By my side
Won't you be by my side
By my side
By my side
Won't you be by my side

My care for you
is from the ground up to the sky
it's over, under, up above
down below and to the side
No use in pretending
no use in saving face
My love is never ending
You are my saving grace

(All photos courtesy of Tracey Wheeler of Yaman-Wheeler Photography, @2005)

Guys Night Out

Last night, my husband did something very unusual. He went out with a friend and did something fun. He has been stuck in the house for months because of this crappy, crippling pain that he has all the time. He's been out of work on disability for 3 months. He is mostly unable to drive, so he doesn't leave the house during the day much...when we go anywhere I drive him. We have awesome friends and family who come over and see us, but when he is cooped up in the house all day by himself, it feels very lonely. He doesn't get to do a lot of the things he enjoys because, frankly, it just requires too much energy for him to spend.

So, when a friend of his called him earlier this week with a ticket to a Grateful Dead concert in Wilkes-Barre, PA, about 80 mins. away, and John turned it down because he just didn't think he could do it, I strongly urged him to go. He LOVES The Dead. But there was no way he could drive himself down there, and he didn't want to spend the money on the ticket if he wasn't going to be able to enjoy the show due to being in pain, etc. Well, this friend kept bugging him about it. Finally, he stopped over at our house on Tuesday night and basically said, "you're going with me, I'm driving, I'm giving you the ticket for *FREE*, you're going." So, John went. And he had a wonderful time. And I am so happy he went. Here are some pictures that he sent me from his phone. And JD....thank you!

Oh, and G and I? We hung in and had a Girls' Night. Complete with Noggin and chocolate and dancing and a bubble bath (hey, she's 16 months old, this is living the high life for her.)

Weekend Highlights

Look at those PINK cheeks! Don't you just want to gnaw them right off her little cherub face? Err...I mean, she's cute, right? I don't condone baby-chomping, just for the record.

This was at the Broome Community College Children's Fair on Saturday. It was pouring rain and cold, so it turned out to be a perfect day to go have playtime in the gym. G was, once again, fascinated by pouring and piling: sand, dirt, macaroni...didn't matter the material. That is how we spent the entire 2 hours we were there, with a quick lunch break. We thought the charge was $3 per kid and adults free, but it turned out that kids under 3 yrs were free, too, so we spent 2 free hours enjoying BCCs creative ideas and got a free kids' book to boot! SCORE! And, we got to spend time with G's Aunt Kate, who works for the BCCenter as a preschool teacher. Awesome.

We ran to Babies R Us afterward to pick up some essentials: diapers and Desitin. I wanted to buy G another pair of jeans for playing outside, as she is wont to do A. Lot. lately. But BRU didn't have ANY jeans in stock, anywhere? Not even in the boys clothes. What up, BRU?? You disappoint me. Capris don't cut it in 40-50* weather.

Saturday night, friends came to play! With us, not G, she was asleep. Rose and her husband Jason came over to drink wine and champagne (no occasion, just for fun) and play Playstation 3. I twittered about my trepidation in drinking after last weekends debacle with Kate, but I braved it and had 2 tasty glasses. No hang over! Yippee!

Sunday, I had a rare!, exciting!, baby-free! shopping excursion! Granted, it was grocery shopping, and Easter basket shopping, but still....I'll take it. G had a lovely afternoon with her daddy. And I got to buy me some new underwear. Everybody wins. And let me just say, Easter basket shopping is not so easy. I had a very difficult time coming up with a couple of inexpensive gifts that G would actually play with. I settled on this which is not exactly what I had in mind, but all I could find. I also bought a nightie (because, really, she looks tooooooooo adorable in the ratty, old hand-me-down nightie she already has, so much like a big girl, I can't take it.) and some toys for her water-table that she will be getting from Nana for Easter. Oh, and I found some cute jeans on clearance for $9.08. Take that, BRU. You lose, Target wins. But the highlight was the $10 bucks I spent for a Rubbermaid tub, 5 boxes of macaroni, and one bag of 16-bean soup, to make a macaroni play bin ala that pic up there. She spent hours playing in that thing yesterday. Scooping the macaroni, pouring it, dumping it all over the patio, picking it up, repeat, repeat, repeat. Thank you, BCC Children's Fair, for that wonderful idea! Kate took a break from her mad thesis research and brought Nick with her to play with G (and us) for a little while in the sunny afternoon. Pretty good day.

Oh, and just for the record, we spent Friday night as a family, just being grateful for each other and all that we have. We went to dinner at Friendly's, had ice cream, and just hung out together. John and I really needed it after the horrible events in our community on Friday. Folks here are visibly shaken and sad, it's palpable. But, as the Binghamton mayor reminded us, we are a strong community, who has endured a lot of heartache, and we will pull together and get past this, and hopefully learn from it and be better people for it. Thank you all for your prayers and love.

Daddy's Little Wonder Woman

Giuliana has taken to running around the house with her arms stretched out behind her, fingers spread wide. She can't tell me what's on her mind, but I image it's something like this: "Wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee, I'm FLYING! Look at me go!"

I remember that feeling as a little kid. Do you? I would run around in circles, arms out wide, sure if I ran fast enough I would Take Off! I had a little thing for Wonder Woman at the time, too. I vividly recall putting on a leotard and some bracelets, sure that they would stop bullets. I may have considered jumping off the garage roof with my gold lasso....

This must have been about the time I was also learning how to climb down from the treetops. When I was three or four I would climb to the very top branches, and then have no idea how to get down. "DAAAAAAAADDDYYY! SHOULD I JUST JUMP DOWN???" His answer was always no. He would make his way up the tree and then help me climb down by telling me where to put my feet. I remember it was like one of those exercises in trust, where you free fall backward hoping someone will catch you. I was always scared he would let me fall if I missed a branch. When I got closer to the bottom he would often tell me to jump into his arms, and I was afraid he wouldn't catch me. He never missed, though. He was always there.

G appears already to have my penchant for climbing EVERYTHING REMOTELY CLIMBABLE. She hasn't started to scale door frames yet (one of my defining childhood accomplishments) but that's probably just 'cause her legs are still too short. We better make sure her bedroom windows are locked, this kid is headed for the roof someday, I'm sure of it. Luckily, she's got a Daddy who will always catch her when she jumps, too.

Giuli-Bear-Love-Bug

Daddy Version


Mommy Version

Marital Conversations (Part 1 of a 4,738 Part Series)

(Yes, I stole that from The Colbert Report, I'm so lame.)




The setting: driving on yet another long ass road trip, this time to Albany
The time: last Friday, noonish
The place: somewhere not far southwest of Albany, on I-90


Me: See that sign over there, for Mr. Subb?
J: Yeah, are you hungry?
Me: No, see, I just think that's pretentious.
J: Mr. Subb is pretentious?
Me: Yeah, why the second "b"? It's totally extraneous and pretentious.
J: There really aren't many pretentious deli owners.
Me: It's just, that "b" isn't even related to anything. SuBmarine sandwich, one "b", suBway, one "b"...why does he need 2?
J: Maybe Mr. Subb is his name.
Me: No, I don't think so, I just think he's trying too hard to be cool. It's wasteful.
J: Are you saying that, in this time of economic crisis, that it is imprudent to have an extra "b"?
Me: Exactly. Think of all the money they could be saving on ink and such, not having to print an extraneous "b" on all their napkins and cups.
J: You should totally write a letter to Mr. Subb, of Mr. Subb, Inc.
Me: I'm sure it's Mr. Sub, of Mr. Subb, Inc., and I think I will.

He totally gets me.

Too Beautiful to Blog

Too busy enjoying the beautiful spring weather to write. Yesterday we enjoyed a walk along the flood wall (Max appreciated the ability to run free a great deal.) And we played outside for a while. I even broke out the patio furniture. Today we have been relaxing in the sun. G is currently napping, but soon some friends are coming over and we will head outside again to soak up the sunny weather while it lasts.

For those of you who have been wondering how our trip to NYC went...it went ok all things considered. John actually saw the doctor this time. We spent about 6 hours altogether between the doctor's office and the medical imaging place. Giuliana was with us, which could have been disastrous, as those of you with kids know, but she did really well. We are blessed with this little angel of ours, who just goes with the flow and finds fun in everything. So blessed that I don't know if I want to take my chances with another one. But that's a different post. So, John saw the Dr. She ordered some blood work and an MRI of his pancreas, both of which he had done that day. She is ruling chronic pancreatitis back in until she sees the results. She thinks there might be a lesion on his pancreas, or something like that that is causing all this pain. If everything turns out normal then she said that it might be a neuropathic pain that no one is ever going to be able to truly diagnose, but that there are better pain management medications that he can try instead of popping handfuls of vicodin all day long. So, not great news, but at least someone has some ideas and alternatives to the status quo.

We didn't get lost this time. Traffic wasn't quite as bad as last time. G did great. She didn't get a lot of sleep (so neither did I) but she was a trooper. She had her first Happy Meal at McDonald's on the way home. I was ridiculously proud. And we still haven't heard from her doctor about the results of her ultrasound.

So, that's where we are. I'm going back out into the sun. Have a great Sunday.

As The Giglios Turn

Hey all my faithful followers! I don't have time to truly post, but I wanted to update everyone on Giuliana's testing yesterday.

It was not fun times. G started screaming the minute the u/s tech turned the lights down and didn't stop till we got her out to the car. Luckily, the tech was wonderful and got us out quickly. She tried very hard to calm G down and was super friendly. G was just in a panic state. We could not get her to stop screaming and sobbing. It was, in a word, awful. We have to wait for the doctor to call with the results, the tech had no idea what she was even supposed to be looking for, so she just measured organs and such.

Glad that's over. G is back to herself today. Thankfully.

We are leaving tonight to drive to NYC for John's appointment with the gastroenterologist tomorrow. Wish us more luck.

Thank you to everyone who helped me climb off the ledge the other day with your warm words of support and good thoughts. I love you all!

So Far On My Ipod and, Today in Modern Medicine

Well ladies (et. al.), I told you so. I told you I had "musical issues." I do thank you all for your great suggestions, I am excited for the day that I can actually check them all out. But so far, my Ipod looks like the 90's threw up on it. (The 90's after being a little hung over from the 80's, that is.) I am loathe to divulge to you all how OLD this makes me feel. I feel like I am that pathetic woman in 1990 who just couldn't get unstuck from 1978. You know the one, she was still wearing long, straight hair when everyone else was ratting theirs, she wore the pants that were flared too wide when everyone else was pinch-rolling, wore flowery shirts when others were just discovering the warm coziness of flannel. Or, as I am writing this, maybe you don't know her, because a lot of you were, oh, what...5 in 1990? GOD! I AM OLD.

Here's a sampling of what I have so far...either purchased or copied from my cd collection:

The Bangles
David Bowie
Aerosmith
Colby Caillet
John Mayer
Alicia Keys
The Supremes
Garth Brooks
Elton John
Dixie Chicks
Tina Arena
Jars of Clay
George Michael
The Beatles
Wham!
Sarah McLachlan
Queen
Big Pretty and the Red Rockets
Run-DMC
The Police
Harry Connick, Jr.
The Duhks (thank you Colleen and Kristina)
Oh, and Stevie Wonder, of course

Oh, my embarrassment. This is going to take a committed effort on my part to get out of this deep trench I have dug myself into by listening to NPR on a far too exclusive basis.

**************************
On a completely unrelated topic...I just wanted to update you on my husband's continuing health problems (and I guess I am into lists today, sorry.)

He saw his primary care doctor today (Shout Out! to Dr. Zhang, he's awesome!) who didn't have anything new to tell us. John seems to be getting sicker as the days go by, not better. He had some blood work done last week at my suggestion because it hadn't been done recently. Nothing to show, though. Everything looks normal. Now, I know that's supposed to be good news, but at this point, ANYTHING showing up would be appreciated. The doctor extended John's disability leave till April 19 at the earliest. We are making the trek back down to NYC next week and having faith that they won't tell us he doesn't have an appointment this time.

But, just for fun, we asked the doctor if there is ANYTHING, ANYTHING other than rest, that John could be doing right now to help himself. ANYTHING AT ALL. The doctor...could not come up with ONE thing that he thinks will help John. Not diet, not exercise, not acupuncture (and this guy's Chinese, too), not yoga, not a vitamin cocktail...nothing. He did give us quite a lengthy list of all the diseases/disorders that they have ruled out. I'm going from memory, here, but here is a partial list of what he spouted out for us:

gallbladder disease (he had his gallbladder removed 4/08, just 'cause)
acute pancreatitis (had that, 7/08)
chronic pancreatitis
hepatitis a, b, and c (had hep A 10/07)
liver cancer
pancreatic cancer
stomach cancer
Sphincter of Oddi dysfunction (had a procedure for that, just 'cause, 7/08)
kidney stones
kidney failure
any infectious disease
parasites
Crohn's disease
colon cancer
colon polyps
irritable bowel syndrome (not completely ruled out, but not likely to cause this much pain)
vascular restrictions around the stomach
ulcers

And I know I am forgetting some of the things he listed.

The doctor asked John what he is hoping for. John was at a loss for words, as no one has asked him that before. I jumped in and said "I would like him to be able to function, because right now, he's not functioning at all. I would like him to be able to live, if not a completely normal and pain free life, at least to have his pain controlled so he can do things like, go to work, play with his daughter, enjoy anything." I know, so much to ask for.

Thanks, I mean it, really, THANKS! for your continued love, support, prayers, good karma and vibes, shoulders to lean on, food to feed my family, all of it. Thank you.

He Speaks for Himself

My husband, John, talks about his own feelings recently here.

The Way It Is

Not to belabor the point, but I find myself whispering this to myself daily, practically hourly, as things continue to fall apart.

God grant me the serenity

To accept the things I cannot change;

Courage to change the things I can;

And wisdom to know the difference.

I struggle to find balance in my nature; I am happy and content by design and it is so at odds with our circumstances...with my husband. I find myself awaking each morning, tired and exhausted, yes, but still hopeful, happy. Only to get knocked down by each new wave in this sea of anxiety and dread that finds a way to keep filling my days even as I struggle to push it out. If you have ever been in the ocean you know that pushing against the waves is futile. It is like the wave that (literally) swept me off my feet and underneath a few summers ago. Just as I thought I had found my balance another, stronger, wave came up behind it and turned me upside down, throwing me into the hard, scratchy sand littered with pebbles and jagged rocks. The wave that stole my engagement ring and threatened to steal my wedding rings too.

I struggle, too, with that feeling of wanting to control everything, to fix it somehow and make it better. To make people be and act the way I would have it. That, of course, is a futile effort. I find myself talking about futility and wasted energy a lot these days. Because, of course, as I have had to learn over and over in my life, the only control you ever have is over your own reactions to things, people, events. To spend time worrying, agonizing, fighting what is is wasting your own limited energy. But the feelings persist. They are there moments after I awake and threaten the peace that I found overnight.

And then, as the prayer says, there are the things I can change. I can change my own angst, my own despair. But, oh, after that initial optimistic waking, it can be so hard to regain my footing. That bigger, stronger wave always seems to be lurking, waiting to knock me down.

So, I pray. This simple prayer that reminds me that I can't control much, can't change much, and it is hopelessly exhausting to try. Instead, I need to accept things as they are, examine and adjust my own attitude and responses to situations and other people. To find peace in being, whatever is. To make sure that I am true to myself, to my own nature. To change the things that I can change, and find peace with the things that I can't.

Serenity.