My Belly's First Birthday

July 30, 2013 I was admitted to Texas Health Resources Presbyterian Hospital at 7:00am to prep for the surgery to implant an Enterra Gastric Stimulator. As many of my readers know, a gastric stimulator is a device that is placed in a subcutaneous tissue pocket, meaning just below the skin before you reach muscle tissue. There are leads attached to the device that are then lead through the abdominal wall to the stomach. There is an endoscope in your stomach, that is blown up like a balloon, that shines a bright light as well as allowing a second surgeon to see the inside of the stomach. The leads are placed in the stomach lining but cannot perforate the lining. That's where the bright light and scope from the endoscopy come into play. The light allows the surgeon placing the leads to see the stomach and lining more clearly, whereas the scope and light allow the second surgeon to insure the leads do not puncture the lining. Once the device and leads are in place they turn on the device. Much like a pace maker helps the heart beat, a gastric stimulator helps the stomach pump. The two main differences are that the stimulator does not make rhythmic motion in the stomach. The pace maker warrants the heart to stay as rhythmic as possible. Also, the stimulator is considered a humanitarian device while the pace maker is deemed a treatment approved by the FDA.


The FDA puts everything food and drug related in categories. We will not discuss the food aspect here. The FDA guidelines for a manufacturer to put in an application for their drug or device to be an actual treatment says it is required to contain the results of scientifically valid clinical investigations demonstrating that the device is effective for its intended purpose. It must also show that the benefits outweigh the risks. From the FDA:

An Humanitarian Use Device (HUD) is a device that is intended to benefit patients by treating or diagnosing a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year. A device manufacturer`s research and development costs could exceed its market returns for diseases or conditions affecting small patient populations. The HUD provision of the regulation provides an incentive for the development of devices for use in the treatment or diagnosis of diseases affecting these populations.

Which, in laymen's terms according to all specialists I have seen, means the humanitarian devices are to improve quality of life for rare, treatment resistant diseases. Due to lack of patients in need of the humanitarian device it is difficult to prove through clinical trials that it works for its intended purpose. Beyond that, with the gastric stimulator in particular, they do not know how it works only that it does. Those are words straight from the manufacturer, the FDA down to the doctors and surgeons. In my opinion, I don't care if you understand all the components. If it will allow me to eat, spend more time with family, and most importantly, be here for the most amazing son in the world (I am not biased).

I remember be terrified and elated on this day. My parents and mother-in-law were in town. I have a lot of extended family in DFW. I was surrounded with love. The hospital staff and surgeons were anxious as well. I am sure they were hiding their nerves because they had not done the procedure before and couldn't predict an outcome. I know they felt I was a great candidate and a good patient. I remember laying in the hospital bed with chaos all around. I had to be fasting for 48-72 hours because food stays in my belly so long. If I never see yellow Gatorade, lime Jell-O, or lemon-lime soda again I will die happy. Good luck on that one, Lauren. I was so anxious to be able to eat and possibly have solid food. The chaos never stopped throughout the day and night.

July 31, 2013 they wheeled me down to the in-patient surgery area bright and early at 7:00am. They, again, went through all the information with me. I was told what their expectations were, but reminded that not everything is known. Before 9:00am I was fast asleep. My family was waiting in the waiting area. I am sure they were wracked with nerves and emotions they cannot describe. The next thing I remember is waking up in incredible pain. A pain I cannot only compare to child birth, and it is a close race. Fire inside my belly. Not heartburn fire, roasting chestnuts fire. I instinctively cried out in pain, still not even realizing where I was and what I had just gone through. A nurse ran in, asked me how I felt, and immediately starting messing with all the wires, IVs and what have you. I don't remember anything again until opening my eyes and my husband was next to me holding my hand. He softly asked how I was and my reply will follow me for life. By then I had realized what was going on so I was happy, but in pain. I said, "Like I got hit by a truck.....a good truck". And the was my first laugh.

Recovery has taken this whole year and we are still working out some kinks. I feel things more frequently now because I am in better health so it is no longer this continuous painful, bloated, nauseated, etc. stomach. And with the options a little more open in terms a diet I have gained some strength so my frail body is easier to live with. The doctors here are managing my diseases as a whole with a much better approach than I have had in years past. I am a person. I am a patient. I am Lauren. I no longer feel like an object, a prize, a puzzle, a hypochondriac, or a lost cause. As I am writing this, I am hungry and it is 3:00pm in the afternoon. You have no idea how amazing that is...even to feel your stomach growl.

I have learned so much in the past several years. This year, of course, has enlightened me so much more. When things started getting bad I was almost done with college, had a toddler, and was working full time. My son was at daycare nearly 10 hours a day. I am a full steam ahead type person. I was discouraged to admit I need to slow down and be near a larger support group, but reluctantly moved back home. I still worked full time, did my classes through distance-learning, and had my son at a baby-sitter's. It was just a smaller town, very short commute, and I had family around to help me out when my husband was at work. Within three months I was at the Mayo Clinic and applying for disability. That in itself is an awakening and one of the most difficult things I have even gone through in my life. I struggled with accepting the rest I was prescribed along with the help I had. I wanted to work. I crave learning. I didn't know anything else...until my disability got approved 18 months later.

My idol mind had drawn me back to a part time job. I wasn't doing as well as I thought and struggled to make it through. I am a stubborn and active person so I wouldn't admit that to anyone. Suddenly, I had an opportunity to, guilt-free, stay home. I had succumbed to the idea of putting school on hold. I don't care how long it takes, I will finish those degrees even if I am 90 years old by then. So in the blink of an eye I was being paid to take care of my own child. He was almost four by then. I quickly realized all the minute things you miss when you are so busy. I got to know him in such a different way and my parenting views shifted. Call me old-fashioned, but I realize why gender roles have always been important. I have nothing against hard working women and working moms, but I am so thankful I get to be with my son without the distraction of work. As time went by I started to notice some other parts of the American culture I never saw objectively.

No wonder my body was a mess by the time I got to the Mayo Clinic. It's amazing that the entire country hasn't just collapsed at some point in life. There is so much competition for success. Success is seen as money, education, job status. Family values and dynamics have shifted so much. Obesity and disease is running ramped. People are stretching themselves too thin. I was for sure. Starting from the time we all come out of the womb the competition and over-scheduling starts. You have to have the best day-care, the best clothes, the best pre-school. Then, you get into sports or "extra curricular" activities, whatever that may be for a child not yet in school. School starts and the parents push the child to hit the ground running. If the parents aren't using all of these things as a baby-sitter for their child, they are deciding for their child what the child likes or wants to do. And the snow ball continues.

I was at a basketball game for my son this past Sunday and over heard a conversation between one mom and another child's dad. The dad seemed very neutral but the mom talking to him was so righteous. She was talking about what her son had been doing all summer and what "their" plans were for the school year. These children are eight-years-old or younger, mind you. I was exhausted by all she had signed her child up for just hearing it. "He is doing basketball. I put him in a swimming/tennis camp. He did soccer earlier in the summer..." the conversation continued behind me with me only catching bits and pieces because I was actually watching the game. I heard her once say, "He hasn't had time to read all summer so that will hurt him when school starts. I am going to sign him up for piano lessons as well. If you don't keep the kids busy, by the time they are in high school they only get into trouble...." At that point I quit listening. What happened to a child being a child?

I started thinking about it myself. I often think back to my life pre-disability and post and my different perspectives in each life. I would love to have finished school and be working in the field full on, but not more than I love raising my son without a middle man. School is so important. These children are young and still adapting to school. Why, then, add all these extra obligations for such a young person. Adults over schedule themselves. They deprive their bodies of healthy food and sleep often times, just to keep up with their hectic schedules. Then, they have kids and need to have the best child so they push and push and push. My thought is the little boy who is her son is going to put his foot down in middle or high school and hate one or all of the things she has him in now. He may resent her from not allowing him to make his own decisions. Children are little people, not an object you show off while you sculpt it into what you would have liked to been or what you think others will envy. Keep in mind, all of these statements are my personal opinion. I am generalizing. I know that not all kids want to have more free time and that not all parents makes these decisions selfishly. I just feel over-whelmed by the expectations so I imagine the kids are as well.

When I was a kid, life was much different. It was a different time. But we rode bikes, went swimming, played anything and everything outside. We used our imaginations and had limited options for TV and video games so they never took over. We asked our parents to sign us up for this sport or that or piano lessons or guitar. We were still pushed. We still rebelled against decisions our parents made for us as soon we had an independent mind to do it. It just didn't seem so competitive as I life can never slow down and down time needs to be earned.

I enjoy the life I live now. I enjoy being a stay-at-home mom. I can't imagine what I would have never seen had I continued to rush through life. Everyone is different and some of us may like the fast paced, over scheduled lifestyle. Some women these days choose a career over parenthood. I actually admire those women so much. To be thoughtful enough to know that you care about your career and a child just isn't practical. That is the most selfless act. Do not bring anything into your life that conflicts with the life you laid out for yourself. The single mom who has no choice but to use day-care, school, and sports in order to have the time to work for the family is also an amazing being to me. The parents who are able bodied and both working, but attend anything and everything to support their kids. The parents who allow school to be the child's priority and listens to their child when deciding on extra-curricular activities. I truly believe the most successful people were allowed to lay their own path, but with the guidance of a parent.

I feel as though I am getting a bit preachy. In short, I just wish the competitive nature we live in is a bit much. I feel like we do not allow ourselves to decompress. Everyone should have that time. Working, not working, sick, healthy, rich, poor should never live to work. Work to live and love those you care so deeply about. Take the downtime. Fight for downtime. No one should rush through life missing the beautiful scenery along the way. The more we love, the more love we receive. In any person's last day I seriously doubt they will say, "I wish I had taken that extra meeting in 2004..."
If you have never been close to losing something you have taken for granted all these years, I hope you take a step back. Take a moment to re-evaluate and decide what you could not live without. Those things should become first in life and the rest can trickle down.

I have gained weight. I can eat out. I can eat. My hair is growing. My nails grow. My skin is no longer transparent. My eyes are no longer sunken in. My clothes (as my cousin Mallory so nicely told me) no longer look like they are on a hanger when I am wearing them. The sun shines every day. I wake up everyday. My sister is my rock and here for me 'til the end of time. I live in a place that makes me feel less foreign, just a rarity. I am not judged (or I don't hear it anyway hehe) or pointed at or shoved off. I am Lauren. I made it to 31 years young. I have a new birthday for my new life. I am one and so thankful to say that. I thank all of you who love me. I thank all of my readers who support me or learn from my experiences. I thank God for the journey. I just have no words to really describe how I feel.

Live your life. Love your life. Never live up to anyone's expectations but your own. Take time to really embrace the most important things in your life.

Pushing The Limits

  Hello all. I know it has been some time, but I have had a few unusual months. I hope it can be a learning experience and eye opener for some.
  On Mother's Day my son received his First Holy Communion. Although, I myself am not Catholic, I understand the importance and honor so I am so proud of him. (We will no longer discuss religion).  Needless to say, the few weeks following up to that were very busy. I was worn down, for sure. It was also near the end of school when the kids are stir crazy. For a few months prior, I felt like I wasn't having as much movement in my stomach. The last time my stimulator had been adjusted was in November. I had a check-up in February, but the symptoms were somewhat brushed off. I knew it may be par for the course. For some reason, maybe the peak of stress, that weekend I instantly felt like I had before I had the stimulator.
  Friday night after dinner I was doubled over in pain. We had gone out to a restaurant I frequent, but it is not completely gluten-free so cross contamination is a possibility. I assumed I had been "glutened". The next day I opted for a smoothie at lunch. With family in town for the big occasion, the girls went for a manicure/pedicure afternoon. While drinking the smoothie during the pedicure, I already felt symptoms of pain and bloating (this kind of bloating is not and does not feel like common bloating). As the day went on it seemed to get worse, but I knew there was no contamination. We went to a restaurant that is a real treat for me that evening. It has very strict procedures to avoid cross contamination. I ordered fish and chips which is high fat, low nutrition, low fiber, bad carbohydrates....but we all deserve to stray. Immediately, I was in pain just walking out to the parking lot. Again, I thought I had been glutened. Or, I thought the sudden feeling of being overwhelmed by family, a lot of activity, and a big stray from my body's normal routine may be too much.
  With my routine being off, as many of us do, I was thoughtlessly neglecting some important factors of my life. I would accidently forget a batch of pills I am supposed to take at certain times of the day. That is SO important for seizure medications. And of course, different medications all metabolize differently, etc. You know the story. The increased activity and lack of rest wears on my body pretty badly. Add to all that, the manufacturer of a probiotic I have been taking for years now suddenly stopped making that probiotic. My local health food store tried to match it's quality with something else. They did supply me with a new probiotic, but unknowingly, it had dairy. A bad storm was at my door.
  After the exciting weekend passed I did my best to get back on track. I assumed all my symptoms were directly connected to my choices those past few days. I had chalked up the prior, more mild symptoms from the previous several weeks to my fantasy of this wonderful device. I was reminding myself it is just a humanitarian device, not treatment; do not expect perfection. As soon as I noticed the dairy in the new probiotic, I immediately stopped using it. The notation was in the tiny print on the bottom of the bottles because there are very few guidelines for supplements and their labels. I just doubled up on an over the counter probiotic I know works very well for me. I knew it would be a few weeks until I would know if it was working in my new system. I tried to get back to my usual diet, but I wasn't strong enough. My mother-in-law stayed with us for a while after Mother's Day weekend. She loves to go out to eat and she enjoys dessert very much. She is allergic to wheat so it works out ok for me. I fell to the guilty pleasures. I also was allowing myself to relax a little. See if my body can be pushed a tad with regard to my diet. It didn't seem to like it very much at all. There were other factors in this complex equation as well.
  We all have our limits, our pet peeves, our comforts, our space. As much as I love my mother-in-law, I had agreed to more than I can handle. She was supposed to stay for six weeks. Part way into the first week, my buttons were being pushed. I was trying intensely to smother my reactions because she deserves time with us, being further away now. Things got tense as the days passed. My husband works full time and my son was still in school so I was with her for several hours a day, just the two of us. That was difficult, especially when I am used to having down time for those few hours a day. In that stress, I again was missing medications and ignoring my routines completely. I continue to speak of routine because it is one of the best ways a diabetic can control blood sugar and my belly works on a routine as well (Lord, how I wouldn't love that to relax a bit). This is so dangerous. For anybody on medication, be strict with yourself. I was risking seizures, severe nerve pain throughout my body, and making my digestion practically impossible. So all this time I have a million excuses for why I felt so awful.
  I finally decided to be a little vulnerable and put myself first until it fell back in to my multi-tasking life. I asked my husband to take his mother home. I felt she had spent some good quality time with us, but it was now pushing boundaries. He agreed.  It ended up working out the best for her that way too, because her sister was ill and she wanted to get back to her. It worked out for us all.
  Unfortunately, I still didn't get a chance to stop to breath. It seemed as though it was one thing after another. I was falling back into my routines food and medication wise, but somehow stilled missed doses every now and then. I had to take accountability for that so my feeling of malaise was not a surprise to me. I was on the edge of an important reminder. There is a difference in taking accountability and blaming yourself. Some things are out of our control.
  It all came to a head one Sunday evening when life had finally felt on track for a few days. My husband grilled some fish for us and I made some oven-baked sweet potato fries. I had been trying to work fish into my diet because most meats are too difficult to digest while fish has the added benefit of incredible nutrients. When that meal was over, I knew something was really wrong. I, again, was doubled over in pain. My stomach was rock-hard and I looked as though I was half way through a pregnancy. I made my husband take a picture so I could so my gastroenterologist. The next morning only confirmed my fears. I was incredibly nauseous, as if I hadn't even been diagnosed with gastroparesis. My mouth was dry and I was so thirsty. No matter how much water I drank, my thirst couldn't be quenched. Everything tasted disgusting, bitter, almost metallic. I wanted nothing at all and all the water was making the nausea worse. By Wednesday I called my doctor.
  Once I described my symptoms I could hear in his voice he too, knew something was wrong. He was booked but tried to get me in as soon as he could. Not only was he concerned about my nausea and lack of appetite, but he was also worried about infections. When I got in to see him I was doing somewhat better with less thirst and dry mouth, but still feeling awful otherwise. He did a usual physical exam and then wanted to check my stimulator. He brought out the Enterragator (I love the sound of that, like a superhero). There is a little plastic disk I place on my skin where the device is located. That disk is attached to a machine that looks like a label maker. He instantly had a look of confusion on his face. Now, I don't completely understand the lingo for this device whatsoever so forgive me if this part is vague. Basically, he had discovered that the stimulator had actually reset itself back to the settings they had first put in during surgery. That was minimal voltage to allow my smooth muscles the chance to work up to movement, let alone digestion. That meant a lot of my symptoms were because I was back to little or no movement of my stomach. This was a mystery to us all. He did also send me for a lot of lab work.
  The next week I saw my endocrinologist. I was surprised to hear that through all the chaos, my A1C was 6.5. That is great because the closer diabetics are to 7 or lower, the less risk we have for complications. He also had no complaints about my blood sugar trends so he made no adjustments with my insulin. By downloading information from my pump and glucometer, he can see how my blood sugar levels are throughout the day usually looking at the last ninety days. With all the missteps I had made in that time, I had managed to do better than I had thought. Again, a blame I placed on myself. He checked the labs my gastroenterologist had run which included my A1C and my thyroid levels. Everything was normal which also meant there was no infection. My symptoms had some to do with me getting overwhelmed and letting that run me over while some had to do with the hiccup of my stimulator.
   I was hopeful that soon I would feel a lot better. When my doctor had initially turned up my stimulator it made me more nauseous. While I was able to eat without pain or distention, I had no appetite and felt like my stomach had butterflies that were moving too quickly. I knew that would pass as I got used to the increased movement. My appetite slowly began to come back. I relaxed about my blood sugars, being more confident in my abilities. Then, for a few days I felt better. A day of fun with my son sparked a new hurdle.
  My son and I share a passion for music and love for pushing our bodies physically. Are we weird? His cousin is a star gymnast at the ripe ol' age of eight so he likes to try out her tricks when she is not around. I happened to be in gymnastics when I was a child, but never made it very far. I am flexible and athletic though, so the few basic movements I remember coupled with my own childhood body contortions, I share with him. He had bought himself the new Michael Jackson CD (his idol) and we were having a blast listening to it while be acrobats in the living room. Once I was beat, it was time for dinner so I made my way to the kitchen. Suddenly, I felt faint to the point of feeling like I could pass out at any moment. I swigged some OJ quickly and grabbed my meter thinking the extra activity had run me low. My blood sugar was fine. Hhmm? As I went about making dinner it swept in and out, but I really felt weak. By the end of the evening I had a headache. I knew I had done too much.
  Over the next few days this rush of faintness continued to pester me. I continuously monitored my blood sugar never seeing a low in these times of weakness. The headache increased and never stopped from the moment it started. I do have chronic migraines associated with my seizures so my neurologist has me on prevention medication as well as an emergency medication I can take at the onset of a migraine. After a few days, I realized it was an intense migraine and those feelings of faintness that now included cold sweats, were the aura. I needed to call the neurologist. That's exactly what I did. She told me to go ahead and take the emergency medication. If within a couple of hours it doesn't help, she instructed me to go to the hospital for IV medication. That was the last thing I wanted to do. I took the medication and waited. I gave my body a little while longer than she said, justifying my decision with my malabsorption. I told myself it had made a dent in the pain. I believe I was delusional. My husband was at work at the time and the next day he had to work open to close so I did not want to inconvenience him. Again, I had forgotten to put myself first.
  Days passed with the pain still there and me deteriorating. I was weak, could not be in light, could barely handle sound, nauseous, and sleeping so much. I kept thinking I needed to give in and go to the hospital, but talking myself out of it each time. Hindsight is 20/20. I was really walking a tight rope. That Sunday my son had opening day for his basketball league this summer. I could not miss that so I did everything in my power to work up the strength for those two and a half hours. I made it that day. I did feel some improvement in pain and some increased strength so, again, I jumped the gun on thinking I passed the danger zone. It is Wednesday now and I still feel remnants of this everlasting migraine (I have had longer and worse before). My eyes and neck still hurt. I can handle very little noise. I am definitely irritable. So, when will this cycle stop?
  Yesterday a light bulb went off in my head. Remember how I stressed the importance of timing with seizure medication? Well, it is also important not to miss a dose as that increases the chance of breakthrough seizures and/or migraines. Ding, ding, ding. My body has been put through the ringer for months now. I was pushing its limits. I was stressed out. I allowed myself to succumb to the thoughtlessness that a healthy individual can escape to when a special occasion arises. I missed the small print of dairy. I pushed aside nagging symptoms. I missed medications. I messed with the routine my body is most efficient in. As a patient I fell off track and blamed myself for the uncontrollables that were also part of the equation.
  Let this be a lesson to us all. There is a reason for the labels on medications. Follow them along with your doctors' orders. Cut yourself some slack or the diseases take over you. We all know our bodies, healthy or not. I have said it before and will use it again, our bodies are smarter than any doctor out there so find a balance. I ignored so much and justified just as much. Now, and for a while, I pay the price. A song I love says, "if you're ever gonna find a silver lining, it's gotta be a cloudy day".

  Although, in the midst of my wallowing, I was unable to get my ten month anniversary/birthday post for my new life with the Enterra gastric stimulator. Today marks day 336 on my journey to the one year mark which marks full estimated recovery time and a clear view of the device's effectiveness. I do believe my bump in the road will affect that a little bit for a short time. But nonetheless, I am here. Eleven months. One year as a resident of Texas. A rug ripped out from under my family and I has brought us to this point. This point of laughing and a little freedom. This point of about 15 pounds gained since surgery. This point I kind of take for granted until those past symptoms creep back or slap you in the face. Who can deny, this is amazing? I cannot be more thankful for the opportunity I have been given. I will do my best to stay conscious about its worth in my life. With that in your hand, it is like a diamond you never thought you'd see.