Re-Run

I've been quiet lately because I have been struggling, mostly internally, with a lot of sh*t I can't discuss. This old post, from 2 years ago, sums up pretty well how I feel. The difference is, this issue is mine, not his. This pain is inside me, not him. And finding the serenity in the middle of my own storm is twice, no...three times as hard, it seems.

Today is a bad day. I'm still trying to find my balance. It's there, I know it is. But it's so hard to find it when your heart is upside down.

Saturday, February 21, 2009

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.

In My Daughter's Eyes

This is one of those songs that I haven't listened to in years, that periodically pop up on my iPod and turn me into mush. That happened last Friday night while I was driving home. Tears were just streaming down my face.  I had a particularly rough time last week. I was feeling like I had had "enough," without really knowing what that even meant. I just felt fed up, used up, chewed up and spit out, whatever cliche you choose. But what to do about it? There really is nothing to do about it. You have to keep on keeping on, right? But I'd had about enough of that stoic little attitude, too.

Enter this perfectly timed reminder. In my daughter's eyes, I see what is important. I see the reminder that life is about "hanging on when your heart has had enough, giving more when you feel like giving up." If I hadn't hung on and given more, my daughter wouldn't be here in the first place. She is my incredible, perfect miracle. She is my blessing. And I would give anything for her. And some day, she will be grown, she will be gone from my home, and these hard days will be a hazy, happy memory with the difficult times thankfully whisked away with the paint brush of time. And I will miss them, intensely, I'm sure. I hope that I will still be (or be again) her hero. I know she'll be mine.

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

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.

A Quick Question and then I'm Gone!

(picture stolen from Resortquest Flickr Stream)

Leaving town in 24 hours to go here and here (picture stolen from mmahaffie on flickr)!!! I can. not. tell you how desperately in need of a vacation my family is. John and I haven't been on vacation since I was pregnant with Giuliana, two years ago. That may not sound like too bad, but in the span of that time we have had a baby (3 days in the hospital, c-section...), John has been hospitalized three times (for loooooong stretches) and also had three surgeries, we have made 6 trips back and forth to NYC for doctors appointments, along with the other 47(ish) doctors he sees between here and Syracuse. I'm ready for a little beach therapy.

First, though, John and I have to make yet another trip to NYC to see the pain doctor. That's Friday. Binghamton to NYC to Bethany Beach. Gag! The trip from NYC to Delaware, people, is straight through New Jersey. Oh, what a wonderful trip that will be. But! The payoff is arriving at the beach house Friday night to join our daughter and family* for a week of soaking in the sun and sand! (Well...for me anyway. Poor John has to travel back home on Tuesday so he can work the rest of the week! Boo!)

My plans for the next six days involve nothing more than laying on a towel reading a book, listening to my Ipod, dipping myself in the ocean when I get too hot, making sand castles with my daughter, eating lots of fresh seafood, bonding with said baby girl, and not much else. Well, maybe a drink or two after she's in bed.

Before I go, though, I hope to spend a few minutes on Itunes, updating my beach playlist. But I need your help! As I've previously stated, I'm generally clueless when it comes to most music. Completely out of touch. (The most recent cd I purchased was Michael Jackson circa 1993...) So, what do you recommend for some summer driving and lots of time sitting on the beach?? Really. Honestly. I need your help. Thanks!

Enjoy yourselves while I'm gone! Miss you! XOXO

* A HUGE! "Thank You!" to my wonderful and generous mother-in-law who hosts this family trip every year!! You are Awesome, Pat!

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.)

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.

Friday the 13th

It's Monday. I'm exhausted. Thank you, Mr. Lincoln, for having a birthday today, because I can't imagine having to go into work right now.
So, for fun, let's recap the trip John and I took last week through the Greater New York (State) and New Jersey area.
We left Thursday. Dropped Giuliana off with my parents, because of course, we couldn't take her, so we had to spend two days away from my Cupcake. More on that later. We headed to Albany to see a neurologist. It was Crappy Driving Weather. Rain, Sleet, WIND!, and some Snow, too. But despite nature's best efforts, we arrived in Albany on time, without getting lost, etc. Good start, right?
So all in all, this appointment, while uneventful, was, at least, an event. It happened, in other words. We showed up, on time, on the day they told us to be there, the doctor was also there, John got nekked (well, ok, gowned), the doctor came in, talked to us, John got dressed, we paid, set up additional tests, left. Easy.
Nothing of note happened at that appointment, really. The guy said that he doesn't think that John is having Focal Seizures, but, since we came all that way, and since he has already had every other test under the sun, we might as well follow up to officially rule seizures out. Basically what we expected. John is to have an EEG and an MRI of his spine to check for seizure activity or nerve damage. We have to go back to Albany for those.
We left Albany (without finding somewhere easy for lunch...where do these people eat?) got on 84 and headed for NYC, via NJ (I hate f*ing NJ). We were still hungry, and also needed to pick up some wine for John's family in Brooklyn (who we were staying with). I was hoping for an actual meal, with a printed menu, silverware, a table cloth, you know the kind. So, we passed up the thruway service area and looked for a promising exit. We got off at Catskill, NY. The tollbooth guy, so helpful like, said "yeah, on the right" when I asked him if there might be a restaurant nearby. There was no restaurant on the right. Well, I should say, there were 2, but they were both closed for the season. So, we turned around and went to the left, and drove a ways into Catskill proper. Cute. Not so big on restaurants either, though. We did find a little liquor store, which carried Upstate NY wines (even ones that I have had and approve of), so check! one item off the list. But the only restaurant that was open had $10 appetizers, to START with. So, we found our way back to 84 and ended up eating greasy, cold service area food after all.
Anyway. I shouldn't be complaining about that, because our trip was about to get much more...adventurous.
On to f*ing NJ (as I lovingly like to call it). Crazy, crazy drivers in NJ. Did I mention previously that I did ALL the driving on this trip, as John was, and is, very heavily medicated and still in unbelievable pain? Well, we survived the traffic. Here are some scenes of NYC "whizzing" by (at 2 miles an hour) while we waited, and waited to get into the Lincoln Tunnel.



The Lincoln Tunnel? Is NEVER easy to get into. You literally take your life in your hands trying to merge from 4 lanes down to ONE, but then once you are in the tunnel, you better fly because no one wants to stay in there any longer than necessary.
Did you know that the Lincoln Tunnel spits you out in Mid-town Manhattan? I think I did know this, but had blocked it out in a psychologically protective move. And while we're on the subject...Mapquest can go to hell.
We got royally lost in Manhattan. We inadvertantly visited Times Square. We ended up going the wrong way on the West Side Highway. We drove casually through Up-, Mid-, and Down-town in an effort to find the freaking Brooklyn/Battery Tunnel only to drive PAST it because the flippin sign? Is right on top of the tunnel exit, all the way in the LEFT lane, while we were all the way in the RIGHT lane. So, we took the Brooklyn Bridge, which we didn't have directions for. Oh, and we drove past the WTC site. Here was our view.


Once we made it to Brooklyn, and John called his cousin for directions, we found their building pretty easily. Things started looking up, too, because we found a parking space directly in front of their building, which is unheard of in that part of the city. It was 8pm by the time we arrived (we exited the Lincoln Tunnel into Manhattan at 6:30pm, so that gives you an idea.) I was graciously given two glasses of wine. Thank you! We spent some time chatting with John's Aunt Stacey, who I had not previously met (she's divorced from his uncle) and his cousins Tommy, Jeanine and Michelle. Soon, we fell, exhausted, into Jeanine's comfy bed. This was the first night in weeks that John and I have slept in the same bed (due to his pain issues, not anger) so that was nice. I woke up around 7am out of habit. I had the place to myself, as Stacey had already left for work, Tommy had gone home the night before, and Jeanine and Michelle slept in. I took time to enjoy a cup of coffee and bask in a sunny, warm Brooklyn morning.


(Kristina, this one's for you, I knew you would fall in love with this old, awesome oven in this sunny, cool kitchen!)


Also, (I swear I was NOT snooping in the medicine cabnit, I was looking for toothpaste!) I saw a medicine bottle with Stacey's full name on it and fell in love. Anastasia Giglio. I am soooo adding that one to the baby name list for future little Giglios. (No, I am NOT pregnant.) I ran it past John, he didn't know that was Stacey's full name, and he loved it too. Moving on.
I enjoyed the morning to myself. But when John woke up he was in a lot of pain. The day before had really worn him out. We had been planning on leaving for his doctor's appointment early enough to park at the hospital and take the subway back downtown to Little Italy to get some food and maybe do a little Valentine shopping. Jeanine and Michelle planned on coming with us to prevent another Lost episode. But, John was in so much pain that he could barely make it off the couch. So, we just hung out in that incredibly sunny, beautiful living room for most of the morning. I printed new, Jeanine approved driving directions to get out of Manhattan (and back into f*ing NJ) without anymore nightmarish tours of the island. At 1pm it was decided that we really needed to get moving to be able to grab some lunch and still make it to John's doctor's appointment at 3pm (for the record, milage from the Brooklyn apartment to the doctor's office...5 miles. We left 2 hours early. How do people live like this?) Jeanine and Michelle assured us that we could, in fact, get better Italian food in Brooklyn since we were in an italian neighborhood. We drove around the corner and two blocks up and stopped at a random pizza place. This was the spread they had out for lunch.



You are looking at (a small sampling): chicken piccata, calamari, shrimp scampi, roasted vegetables, breaded artichokes, ziti, bruschetta. Oh, and pizza. Lots of pizza.
This is John's idea of HEAVEN. And I had to talk him into eating a slice of pizza. He didn't think he could eat ANYTHING because he felt so crappy. We ended up only having some pizza (which was so thin you could practically see through it, except for all the yummy sauce and CHEESE!) and the BEST bruschetta I have ever had (I really should have taken a picture of this beautiful bruschetta.) YUM!!
We left for The City. And hit standing traffic trying to get out of Brooklyn. Sigh. Skip ahead an hour, and we made it to Presbyterian Hospital with 15 mins. to spare. Perfect. Jeanine offered to just drive my car around while we went up to the appointment to avoid either a): spending $50 on a parking garage, or b): driving around for an hour looking for metered parking. Very nice of her. So, we got out and went up to see this GI that John has been looking forward to seeing with equal parts of hope and apprehension. We both feel that if an answer is to be had, it will probably come from either her, or whoever she refers John to. So, needless to say, we were both nervous and invested in this appointment. Only, as the receptionist assured us, we would need to hold that thought for another month, because our appointment is not Friday, February 13th. It is Friday, March 13th. Now, I promise you, when I made that appointment a few weeks ago, I was told FEBRUARY 13th. Because I double checked with the woman on the phone. And she said yes, FEBRUARY. But, you really don't have much choice when you are standing at the reception desk on 2/13/09 at 3pm and the surly receptionist points out that you are, according to her computer, a fool who is a month early for your appointment, and how stupid are you anyway? You know, I have never invested much energy into the whole Friday the 13th drama. But now, with TWO Friday the 13ths in a row...I am nervous for next month. I am not even going to go into all the bad juju that might happen when we venture back down next month for our actual (it damn well better be!) appointment.
Needless to say, both John and I were royally pissed off and depressed leaving the office. Double Sigh. But what else could we do but come back?
So, Jeanine and Michelle got out, after giving us much needed hugs, and headed for the train back to Brooklyn. And John and I headed out of NYC. Oh traffic. I hate you. Yeah, we weren't the only ones heading out of NYC on a Friday afternoon. But, as I am getting way to experienced at driving in crazy ass traffic, we didn't get lost, or hit, and did actually make it out of the city (via the GW Bridge this time, not, thank God, the Tunnel) and back into f*ing NJ in one piece.
As we merged onto 17W in Paramus, f*ing NJ, there was a holy light...and this:


and John said since I had been such a good girl all week, and since he had eaten a few handfuls of pills, that we could stop. YIPEE!!
An hour and a half later (and $150):



IKEA. I love you so. And my husband, who was an IKEA virgin, and who HATES to shop, even said that he could see the draw, the love that is IKEA. And he said we can go back some day for a kitchen :) Double YIPEE!
We picked up a little red rocking chair for G's valentine. She loves it.


So, we also had to stop at John's Uncle Jimmy's restaurant in Rock Hill, NY to pick up a pan of eggplant parmasean for John's dad. Yes, I'm serious. Then we went to their house to eat our dinner and chat. You cannot drive past Uncle Jimmy's without stopping to eat and chat. It is not done. Even at 8pm when you haven't seen your daughter in 2 days, have had a horrible trip, are tired, and still have 2 more hours to drive.
We arrived at my parents' house at 10:30pm to pick up our sleeping little girl. She woke up and was mildly (ha) unhappy about it. We took her home. She fell asleep in the car. And so I woke her up again getting her out of the car and into bed. Which would have been ok as she really wanted to go back to sleep. But when I was rocking her, her diaper leaked. Which NEVER happens. She soaked through her onesy, her jammies, her blankie, and me. At 11:30pm. Sigh. So, I changed her, and had to take away her blankie. All of which woke her waaaaaaaaaaay up. And so then we rocked, and rocked, and had a bottle, and rocked, and finally I just took her to bed with me because my husband was going to sleep on the couch anyway. And of course she didn't fall easily asleep there either. So, I (did not) got a LOT of sleep after such a crappy, long, stressful, muscle knotting trip.
Friday the 13th. Yep, that's about right.

A Little Help From Our Friends

As a lot of you know, my family has been going through a difficult time lately. John has this crazy pain in his abdomen that brings him to his knees many times a day, and leaves a lingering pain 24/7. He finds it hard to do almost anything, though he tries and tries and it leaves him in even more pain. His doctor finally put him on disability on Thursday for at least 4 weeks. Luckily, we both work at an amazing agency that just so happens to work with people with disabilities, so, there's a lot of sympathy and good benefits. He will continue to receive full pay while on disability, as he did the last 3 times he has been on disability in the last 18 months (3 hospitalizations).

I have been trying to keep up on my own, but, man, it's hard. I had an insane month at work due to changing jobs. I haven't seen much of my daughter because of working so much. I have been so exhausted that I have just basically let all housework go. Now, I grant you, for me, that still means my house is pretty clean. I am fastidious, I admit it. "Hi, my name is Kami, and I'm obsessively organized." I manage to keep all of G's toy picked up most of the time, or at least picked up enough so they don't take over the house. I literally can't sit down until any and all "piles" of stuff have been put away. I HATE! piles. They do not exist in my house. And I straighten furniture, knick knacks, etc in my sleep. I can't help it. But...there is a fine layer of dust, cat hair and dog hair on top of EVERYTHING in my house. I have 3 baskets of laundry in the basement that haven't been sorted, folded or put away in 2 weeks. I have a big pile of sheets, towels also in the basement waiting to be washed, and 2 overflowing hampers upstairs. I haven't truly cleaned my bathroom in weeks (ewwww). I haven't vacuumed possibly since Christmas, I can't remember. I haven't even swept my hardwood floors in a few weeks. I did finally break down yesterday and wipe up all the sticky spots on my kitchen floor, but it hasn't seen a mop in quite a while. And my little backyard? Where the dog is let out? Let's just call that a disgusting, vile, biohazard and not talk about it anymore. Now that I have you thoroughly grossed out, let's move on.

I put out a call, both on my blog and in person, last week to any and all friends and family who might be able to help us out a little bit. And I just want to say a HUMONGOUS THANK YOU! to all the people who have responded with their help, their time, their love and support. Dan and Colleen came over the other night and brought a big, yummy lasagna that we have been enjoying ever since (read: I don't have to cook). Rose and Jason came over last week and took our dog for a very much needed walk (read: less jumping on G). Kate and Nick came over today and played with G (read: I took a nap!). And then there are all the people at work who have offered me a shoulder to (literally) cry on, advice, and help actually getting sh*t done, too. And my parents who have been there whenever we needed any extra help with G. And all my bloggy friends who have been there with loving words and thoughts. Thank you, thank you.

I don't know where the next few weeks will lead us. We have a lot of important doctors' appointments coming up. I sincerly hope that we will find some answers. Hey, a diagnosis would be nice. It is so much easier to go down this road with all of you behind my back, propping my exhausted self up.

Another Failed "Cure"

Yesterday just sucked. It was emotional, disappointing, and stressful. Sorry, Kristina, the sun didn't help my mood.
G ended up having an ok day. She, according to my mother, wasn't fussy or cranky after I dropped her off in the morning. She played nicely all day and ate well, took a good nap. All good things. She was in a good mood when I finally picked her up at 5:30pm and made us laugh and smile last night. But my heart ached for her all day.
And meanwhile, on the other side of my heart, John had a really rough day. He had a doctor's appointment in the late afternoon. I accompanied him. We waited roughly an hour before anything happened. The long and short of the appointment is this: it didn't work.
See, his GI doctor has determined that he can't find any gastrointestinal issue with John. He says that he has done every test and everything checks out. I have a very hard time believing or accepting that. But, anyway, his new big idea was that there must be some nerve dysfunction in John's abdominal wall that is basically causing his nerves to go haywire and causing the pain. So, he proposed to inject a numbing agent, much like you get at the dentist, into John's chest to see if he could numb the nerves and stop the pain. If it worked, this numbing agent would make him pain free for 4 glorious hours. After that, once they knew it would work, John could get a long acting shot that would work for 3 months. 3 Months! Of no pain! Of a normal life! It's like porn to our ears! Yeah, well, the shots, all eight of them, didn't work. His chest was numb. But that didn't stop his pain.
I think I bought into this concept more heavily than John did. He never seemed all that excited about it. I guess he has heard Dr. Marhaba promise a cure to his pain too many times now to believe it. I was so hoping that this was it! This was gonna work! Life would get back to something resembling normal and John would be free of this, and la de da, isn't spring just around the freakin' corner, too? I am so frustrated and disappointed. I have absolutely no idea what to do next. I think Dr. Marhaba is out of ideas. That may be a good thing, since everything he has done has just caused more problems (he's the genius that triggered John's pancreatitis in June.) But, I don't even know where to turn now. We have exhausted all the local resources. John has contacted his aunt who is a nurse in Brooklyn. She is working to locate a doctor down there who might help. We'll see.
I guess we'll just have to hang in there. Going permanently back to bed doesn't seem to be an option.

Monday

This is my beautiful family, reveling in being TOGETHER tonight...no one has to go anywhere. Smile. G is feeling very cuddly, happy to be home.

John's colonoscopy went well....if you can say that about any colonoscopy! He did wake up in the middle of it....yikes. He said it was very "uncomfortable." I bet! But, they didn't find anything, so that's good. I guess. In one way it would be nice if they could find SOMETHING! already. But, at least he is clean as a whistle, now.

We were back home around 1pm with a stop for lunch in Cortland on the way, so that wasn't too bad. We both took nice nap, then I went to pick up G at Grandma's house. And now we're home.

General Hospital, Take 2

After a gloriously relaxing weekend in peaceful Vermont, John ended it with a very unrelaxing and unpeaceful trip to BGH ER. He was admitted again with horrible abdominal pain that continues to be undiagnosed. Tuesday the on-call GI doc did a procedure to remove a stent that had been placed in John's common bile duct last month. The stent was supposed to fall out a couple of weeks ago but didn't and the doctor admitted that he didn't have any other ideas about what to do for John. Unfortunately, so far it doesn't seem like the procedure has helped at all with John's pain. John was released from the hospital on Wednesday in just about as much pain as he went in with and a small, low dose of pain meds. He spent the next two days trying to get any doctor to listen to him that he was still in pain and the meds weren't sufficient. However, at this point, none of the doctors seem to care, or at least that's how they act. What is it about doctors that they don't listen!? And, what is even more infuriating is the arrogant attitude they throw you when they can't figure out what is wrong with you...so it must be your fault for still being sick, or worse, you must just be a junkie looking for a narcotic! Needless to say, John has had it with doctors and the medical community in general. So, he has decided that for now, he is just done with them and will find ways to live with the pain. It really shouldn't be like this. I have a whole new appreciation for the families that I work with who have to go from doctor to doctor just to try to get a diagnosis for their developmentally disabled kids. And the humiliation and frustration they feel when people don't listen, when they have to repeat their stories a million times, when they have to endure test after test with no results...what a messed up system!


A gratuitous pic of my hot hubs, from Easter, since I don't have many of him on here.