The Hardest Year:2012 in Review

As I sit on the threshold of a new year, I am doing what many are doing tonight. I'm looking back on the year nearly over. I am marveling at the struggles 2012 brought for me, medically, professionally, and personally. With all this reflection I'm left wondering how the hell am I still standing? How did I not crumble? The answer is astonishingly simple. I was unwilling to make a choice that was anything but getting on with it.

Lest you have forgotten what I fought through in 2012 here it is again.

I was admitted to the hospital three times this year. I spent a total of 12 days in the hospital. I had two major surgeries this year, separated by just three months. Collectively, these procedures meant I lost a month worth of work time.

I had another gastric emptying study, an MRI, a head CT, a chest X-Ray, a Ph-probe study, a swallow study, an endoscopy, an MRA, and two doppler ultrasounds. I wore a Foley catheter for six days. I had testing of my bladder function. I now take nine different medications a day and two more as needed.Yes, I remembered all of that on my own, though I do have it written down for when I see a new doctor.

Speaking of doctors, my team grew by three this year. I now see: a primary doctor, two gastroenterologists (a general GI and one who specializes in gastroparesis and nutrition support.) a pulmonologist and a uroligist.


Yet despite all of that, I have excelled at my job I'm doing so well that I got a performance award during my year-end review in November. I have the best work family I could ask for. I am valued for what I bring to my job, and am missed when I can't be there.

So, while this year may well have been the hardest of my life, I made it through. 2013 is shaping up to start off just as roughly as I will be starting Total Parentral Nutrition (IV nutrition) in the coming days or weeks. I will make it through that too. As I tell everyone who stands in awe of my strength or courage or bravery, there is simply no other good choice. Just do it!

On Sandy Hook.

On Friday, tragedy was visited on the U.S. once again. A young man broke into a school in Connecticut. He walked into a classroom of Kindergarteners and opened fire. He left 20 children and six adults dead in his wake before taking his own life.

The thing that breaks my heart the most about this incident is how close to the holidays it is. Five and six-year olds are the one who believe most reverently in Santa, Rudolph and the magic of Christmas . One desperately ill man's act of violence has effectively ruined Christmastime for twenty-six families from now on. Instead of counting down the days until Santa comes, families are planning funerals. For what purpose? What message could you possibly send through an act like that? Just senseless.

I  know I'm kind of late in posting something, but I have only just begun to process  what happened. I can only hope the families affected can find some measure of peace in these dark days, I hope that promises made in regards to the necessary policy changes will be made real. In the wake of this event everything from school safety, gun control and mental health service provision will come under scrutiny.

Something's got to give.

Grateful Despite It All.

Well, it's Thanksgiving-eve here in the States. Thanksgiving was one of my favorite holidays growing up. We went to my grandparents every year, Thanksgiving was one thing that was cool after my parents' divorce. We got twice the turkey! What could be better than that.

My experience of Thanksgiving has changed over the last couple of years. Last year was the first year I wasn't going home for Thanksgiving. It was also my first Thanksgiving with gastroparesis, though I  didn't know that for certain. I spent the day with a friend, ate, talked and laughed. Yes, the holiday is food centric, but I managed to find joy in the face of uncertainity. This year I will spend the day with that friewnd, eat, talk and laugh. Even though the uncertainity of awaiting  diagnosis has been removed, parts of the road ahead are still obscured by the shadow of the unknown. That's OK though. I have so much to be grateful for.

I am grateful for recently renewed friendships. I make a habit of pushing people away, then being surprised  when I find myself alone. I have been shown the value of having people in my corner and I value their friendship more than they will ever know.

I'm grateful to my work family. They support day-to-day so that I can still contribute. The friends there give me a safe place to fall apart when I need to. My supervisor couldn't be more understanding. I truly lucked out.

I am grateful to my awesome team of specialists, While sometimes it can feel like they're groping for answers right along with me, I know that by-and large, they really care and want to give me  the highest quality of life possible.

I am grateful for my life. As hard as it is, as fraught with uncertanity as it is, I have a purpose. I don't quite believe that everything happens for a reason, but  if anything has brought me closer to beliving that it is this last year and a half.

Yes, Thanksgiving is going to be different this year, but so am I. Just like last year, I will find joy amid the grief.

Happy Thanksgiving!

In Which The Other Shoe Drops and I Have "The Talk

OK, remember how I said I was taking solace in the fact that supportive measures for nutrition have never come up? Yeah, that was nice while it lasted.

Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!

After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've  kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.

"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)

"No."

"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some  changes medication changes to see if that helps.

So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.


Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.

In Which I Become a Cyborg Part Two: Surgery

I am ready to continue the story of my experience having a gastric nuerostimulator. placed. My mom and I took a cab to Big Academic Medical Center bright and early on the morning of September 24. We got there way ahead of my scheduled arrival time of 7:30, so stopped off in the cafeteria so Mom could grab a cofee. Then we made our way to the surgical waiting room where we installed ourselves in a corner to watch shows on her laptop until it was time to check in. Eventually I was called to register, then we waited a bit longer and were brought to pre-op with several other patients.Mom helped me change into a gown, we transferred me to a gurney, an IV was placed, then we just waited.

Once the IV was placed, Mom mentioned that she had seen on the cover of my chart that they were calling the procedure day surgery. She asked how I would feel about going home right afjter surgery. I was hesitant, but knew that I'd be in good hands with my mom. Soon, Dr. B. came by to look at my chart. While he flipped pages, I asked where he planned to place the external part of the stimulator.

The system has two parts, the generator which is placed right under the skin of the abdomen generally on the left side, since that's where the stomach lives. The second part is the leads that are implanted into the wall of the stomach. The device is used as a treatment for the nausea and vomiting associated with gastroparesis that doesn't respond well invasive therapies like medications. It works by sending counter signals to the nerves of the stomach that would otherwise tell my brain I was nauseated. For some, it's the best tool they've found to help manage symptoms.

Dr. B. told me that he'd place it on the left side. He also told me that he hoped I would be willing to complete a questionaire about my symptoms before and after the surgery for MALS. He is doing a study of who are really good candidates for surgical correction of that syndrome. There was pre-op questionare and a post-op questionarre. Since nothing really had improved from before the surgery, it was easy to fill them both out after the fact. As unique as I am, I've never been part of a study. I'm weirdly excited about that.

Soon after Dr. B.left, the most attractive anesthesiologist I have ever seen came in. Seriously, he was so handsome. Awesome eyes, a beard that fit his face perfectly. He was just very fun to look at. He was impressed by my knowledge of myself. He gave me the awful ant-reflux junk. I  told him about my history with Scanner/ OR Tables of Death. That would turn out to be the most important thing I told him. I said goodbye to Mom and don't remember anything until the recovery room. He must have given me something really good. After about three hours, the surgery was over and I woke up in recovery.

The thing I remember most about  recovery was the pain. It huirt a lot more than I thought it would, especially in the area where the generator was implanted. In retrospect, they created a pocket where pockets do not naturally exsist, it was bound to hurt. It was also where the largest incision was. I was so glad to have my old friend morphine to keep me company! Afteer only an hour ore so in recovery, I was moved to a room. I got to bring along some oxygen this time as my lungs were trying to go on strike and my saturations were dropping a little.

Once I was in a room, I began the Wait for Pee. I wasn't going to write about this part, but figured it would be good for others to know. General anesthesia paralyzes all the muscles, including the bladder. That's why you'll often have a foley catheter placed during surgery. I discovered in June that my bladder is particularly suseptible to freezing up after having a foley in and then taken out. I ended up being sent home with a foley in place in June because my bladder just wouldn't cooperate. Anyway, this time around I didn't  have a foley because I was already at risk of infection because I was having something implanted. It was up to me to break through and go on my own. This proved difficult and involved literally hours of trying. I tried different positions, while drinking, even got out of bed to try on a commode. After hours of trying without success, I let the nurse take care of things for me just so they'd leave me alone. After that and my nightime meds, we sertled down for the night. It was a restless night. I had realized the morphine was making my nausea worse, so I wasn't using it and was in a lot of pain. Morning rounds found me in a lot of pain still but eager to go home for my birthday the next day. I convinced them to let me go. I was still in significant pain, but not as nauseated and was now peeing just fine.

Before I left, I had my mom get me a bagel from the cafeteria. I took a bite and almost cried for the joy of it. It was the first taste of food I'd had in over a year that actually tasted good. I ate about a quarter of it then was full. I was ecstatic. Maybe, just maybe this was the answer I'd been hoping for.

Scared....

About a year ago, after my first emptying scan but before my diagnosis, I joined a support group for those with gastroparesis. I was initally petrified to think that some of those stories could be in my future. Feeding tubes, TPN, central lines, gastric pacemakers. This is the world I would be living in. It was all kind of fascinating in sort of an anthropological sense. I was intrigued to see how some of the people who seemed so desperately ill could find ways to live full lives. There werre many young women who were in college. Many others who worked at least part-time. I began to see how I could find my new normal amid the insanity that is gastroparesis. My view of the disease was two pronged. People were either pretty sick but lived full lives anyways or they were trapped by the illness in their homes doctor's offices or at worst in hospital rooms. The idea of dying from gastroparesis never crossed my mind. How naive I was.

Six months ago I saw a post on the support group announcing the passing of a young man due to gastroparesis. I was saddned by the news in the way that I think most of us are. Every death is tragic, especially when it happens too young. I will admit that news of that first death didn't resonate much with me. Not in the way that others have since, and there have been many. At least 10 that we know of.  There have been six in the last two weeks alone.

 Each announcement makes me feel a little more vulnerable. I still am relatively healthy in relation to some of my friends. Yes, I have a stimulator now, and it isn't working as well as I had hoped. I am writing this in part to distract myself from the pain from my dinner of a bit of soup and saltines. With each annoucement, I lose a little of that anthropological distance with which I began this journey, and I start to think that it could be me. Not next, not even soon, just someday. Someday tthis insane disease could in fact kill me. That is a bizzare thing to even begin to contemplate.

I try to find some comfort in the fact that no one has ever mentioned more drastic measures like TPN or tubes to me. I know logically that just because I have the stimulatorthat doesn't take the more agressive interventions off my horizon. I can tell my self it won't be me all I want. I never imagined my life would be ruled by such an insidious disease, either.

In Which I Become a Cyborg Part One: Getting There

Again I've been seriously lax in updating. Once you read this post I think you'll forgive me. When last I wrote I was fresh out of surgery to fix a rare syndrome. My surgeon wanted me to call his office when we'd reached eight weeks out from that surgery, at which point we'd move on to other surgical options if need be. I am very goal oriented so I went so far as to put a calender entry on my phone for August 16 that read "Call Dr. B." It wasn't that I had no hope that this surgery was going to help. It's because I am a realist.  This realism extended to my telling my boss that I would most likely be out for  more surgery in the near future.

I struggled through July. Zofran was officially useless to me. I lived off of Jello and juices. My cough was ever-present and bad enough that I was resorting to my nebulizer at least twice a week. I was slowly losing patience , and hope.

As soon as August rolled around, I could see the light at the end of the tunnel. I only needed to hold on a little while longer, then we could make a plan. That optimism lasted about a week. After a morning of such intense cough that I was afraid I'd crack a rib, I gave in and called Dr. B's office. I was so desperate for answers that I also emailed Dr. Lungs and called my GI and left a message. Dr. B. called back himself later that day. He agreed that we should move forward with the gastric nuerostimulator,, We weren't sure how long it'd would take to get insurance approval for the device, but at least we were moving forward. I made it through the day at work and was on my way home when the phone rang. It was my GI. After a long conversation, it was decided that I should see an ENT next. Alright then.

A little over a week later as I was leaving my first ENT appointment, I saw the voicemail icon flash on my phone. It was Dr.B's assistant. I frantically called her back. She told me that my primary insurance had approved me for the stimulator! I could tell by the way she said it that there was a catch. Sure enough, my secondary insurance had declined to fund the device. What had started as such a positive conversation had quickly turned into a near-nightmare scenario. I knew that I needed the device. I also knew that it wasn't  going to be easy to afford the 20 per cent that would be my share of the device. Since I was nearby, I ran over to the surgeon's office where they had the diagnostic codes for the device ready for me. In the lobby, I called my insurance company. Here's a tip: crying gets you nowhere fast with insurance companies. Especially this insurance company. They  confirmed that they did not in fact cover the device, even when primary insurers did. Fantastic.

After a minor freak out during which I was certain that I would never get the stimulator, I made a plan. I would call the manufacturer and ask them how mush the device cost. Then if all else failed I would call the hospital. The next day, I called the manufacturer and the hospital. Neither entity could tell me anything useful. The manufacterer because the price they charged hospitals wasn't the final price I'd see because of markups by the hospital. The hospital seemed utterly deserted since I couldn't seem to get out of Voice Mail Purgatory the day I called. This was a Friday. Over the weekend I made the decision to schedule surgery on Monday. The rest would work itself out.

So on Monday I scheduled surgery with Dr. B.'s office for September 24. That was just over six weeks away and two days before my twenty-seventh birthday. Yes, that would mean my birthday might not be the most fun day, but I could think of no greater gift I could give myself than the possibility of feeling even halfway normal. I told my bosses the plan, my mom booked tickets to fly down to be there with me and I tried to temper my excitement. It was more difficult than it may seem. Every story I heard or read about someone with a stimulator, it seemed to be the key to turning lives around. Soon that could be me.