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.
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