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.

Lesson Learned- Competitive Bidding Program

Moving is always an adventure. Most of us loathe the process, but enjoy the change. Moving to a new state entirely for the first time in your life while you are ill and receiving new technology in treatment is more than an adventure. I am but a sad New Mexican who is ignorant to how the world outside of New Mexico works. The Federal part of our wonderful country is a layman's understanding as well as the history for myself. But New Mexico is like a small town that runs at a very low speed and is off the beaten track.


Along this first year in Texas, I have been through my share of awakenings. In the short five or six weeks I had before having my gastric stimulator implanted, I had to move in, familiarize myself with the area, get address changes for everything under the sun, switch my son's insurance, and do all the preliminary stuff for the surgery. I thought all that was hard. I thought all I had to do is get acquainted with new doctors and get a new driver's license. Boy, was I wrong.


Doctor's alone have kept me on my toes. Of course there are several and frequent appointments for my stimulator. The first year of recovery and calibrations is tough. I also have had to establish with a neurologist, an endocrinologist, a dermatologist, and a rheumatologist. If you have read some of my previous posts you will know that a rheumatologist is no longer necessary as the symptoms seem to be a latent version of adrenal insufficiency that has been difficult to pinpoint. I am still needing a urologist for interstitial cystitis and an ophthalmologist, but the task seems so daunting at the moment I have procrastinated greatly. Unfortunately, it seems as though my primary care doctor needs to be replaced. That's a topic for another post, but let's just say she's not the best with being thorough or with her bedside manner.


I am on Medicare so none of this is easy. Less doctors in Texas take Medicare so it was like finding a needle in a haystack just for the doctors and services I need. I have changed prescription drug plans three times. Recently, I ran into a new road block. This story has plenty of twists and turns. Are you ready?


Back in early November, an 18-wheeler somehow came into our apartment complex and smashed our mail center. It is just a gazebo with the mail boxes all around. Supposedly his GPS took him the wrong way, but any logical person would know not to turn into an apartment complex in an 18-wheeler. Needless to say, every one's mail was in there. The apartment management had no real answers for us other than, "You can now pick your mail up at the post office until the insurance can get us a new mail center." What about the mail that was in our boxes at the time? A mystery yet to be solved. Here we are at the beginning of April and we are still picking up our mail at the post office.


I had been running low on pump supplies for a few weeks now and I had not received any word about my automatic shipments like I usually do. Medicare makes you go through a third-party supplier and they usually send me an email the day it is shipped. I finally called them. I was informed that Medicare is no longer contracted with them. They have switched to a "Competitive Bidders' Market" in our area. I was advised to call Medicare to move forward because I should have received a notice back in October or November. Do you see where this is going?


Just a few months earlier, I had been working with my doctor's office on getting a new pump supply prescription because mine had expired. We began the process in late September, but the back and forth was finally done with in November. I received everything I needed. Now, switching over to a new supplier meant getting a new prescription. I knew this would be a potentially long process, but gritted my teeth and pushed through, step by step getting increasingly more frustrated. I couldn't get my old supplier to send out complimentary supplies to get me through. They could not transfer the old prescription; don't ask me why because they gave me an answer that makes absolutely no sense as most things in the medical field do. The manufacturer somehow had no record of me since 2011. Well Medtronic, I bought a new pump in 2012 that you sold me, I have been receiving supplies since than that the third-party gets from you, and finally I have an Enterra gastric stimulator implanted in my abdomen that you all made and registered for me eight months ago. (Everybody clap your hands for eight productive months) They also refused to send out some "hold-me-over" supplies all due to the fact that no one has a "current" prescription except the supplier who no longer supplies me. Aaahh


I start putting one foot in front of the other to begin the long process of finding a new third-party supplier. When I called Medicare they gave me three phone numbers of three different suppliers. The first two did not supply pump supplies. Check them off. The third said they did. Yay....they began the registration and started the paperwork right away to get me squared away. It took only a week of back and forth confusion this time to get the new prescription done. I finally received my supplies last Friday, and they were the wrong supplies.
It was a generic brand of supplies that claimed it works for all pump models including...and it gave a list of manufacturers and models. My model was not on the list. Next step, call the manufacturer to see if the generic is even possible. There is a high likelihood that the pieces do not fit my model and may possibly crack it. I turned back to the supplier. Suddenly, no one was available in the pump department to service my call that day so I left a message. That felt odd. I did tons of research on the Internet, because where else do you turn for honest information (haha). I kept coming across the same information the manufacturer had given me. Nothing can be done on a weekend so I tried to block it out until Monday. I did contact my NM diabetic educator to ask for supplies because no office here has them on hand. I also contacted my sister who has a similar model of pump. Both are doing what they can to help with supplies until I have this straightened out. I finally gave in and paid cash for supplies to give me a bit of a cushion. Stockpile baby, stockpile. Then I get a call saying they will not ship out supplies because I am a Medicare patient who needs to go through a third-party supplier with a prescription.


On Monday I called the third-party supplier, All American Medical, and notified them of the mistake. I was informed they do not supply my particular needs. Back to Medicare I go. I got two phone numbers for the "Competitive Bidders' Program". Surprise, surprise. These suppliers do not supply pump supplies. At this point I am thinking, "this competitive-bidding program is definitely not organized or handled well". When I was waiting on hold for the umpteenth time with Medicare, I decided to go online to see if I could pull up some names for this "Competitive Bidders' Program". Thank the Lord, I did. 17 were listed for my zip code so I went straight down the list. I called everyone of them I could and was very specific about the supplies I needed for my particular pump. About five businesses in, I found one. They only supply Medtronic pump supplies. Phew. Now, I await the aligning of the third-party and my doctor's office. This time I talked to my doctor's nurse and drilled into her what I need the prescription to say so I can leave this trouble behind as quickly as possible. By this time, I believe she feels the same.


Little by little, you learn how to navigate the world. New Mexico is not in the "Competitive Bidders' Market" so I had never dealt with this. Apparently, the program is new across the board but some states do not fall into it. After ripping my hair out, losing my cool with every single person I talked to, and spending all weekend trouble shooting with my family's help, I now know exactly what to ask when dealing with Medicare and third-party suppliers. I also know that screaming does not help a thing. As if at the ripe ol' age of 31 I didn't know that, but, ya know, long term stress can manifest an entire person you do not recognize. Luckily, the beast in me is only in view sparingly and this year I am releasing all demons so soon I can be the me I have always known....or possibly, quite possibly, a better me.
I am noticing more energy. I am noticing a more nourished look throughout my body. I am noticing a lighter heart. The volunteering, church, my son's school and teacher, and enjoying our new surroundings has really started to bring to light the me I used to know and embrace. Being so ill everyday can wear on you and most of us feel a great deal of guilt, inadequacy, and grief when going through a change like a diagnosis of a new disease along with its symptoms. Sometimes we get lost in it all and forget who we really are or think because the disease has caused limitations that somehow limits our personality or self worth. This healing process and recovery from what I have been through these past few years including the gastric stimulator implant has been a long road, but proving to be worth it. Lessons learned, wisdom gained, strength and resilience abound and a new heart and mind rise from the ashes made by the bridges of our "old" selves burned like the Phoenix.
That was a bit off track, but the lesson of "no matter how many times I think I've got it covered" i.e. my insulin pump supplies and Medicare, there is always a wrench coming in, eh hem "Competitive Bidders' Program", to teach you a new lesson. Along the way more layers of yourself are pulled back to open up a new part of you.
I certainly don't mean this post to come across like I am worse off than anyone else or that I have seen more pain than others. I know that is not the case by any stretch. I just realize everyday that I have not seen every struggle or I would know how to face them more appropriately.
Never stop learning....just try to stay level headed unlike I did.

6 Month Anniversary and A New Life Unfolding

Well ladies and gentlemen, I just passed my 6 month mark with my Enterra gastric stimulator. I can't believe it has been this long. Everyday I am noticing new and interesting ways my life and body have changed. Let me say, it is mind blowing and feels unreal.


As you can see, the biggest change is the swelling. The swelling has gone down so much that you can actually see the device even more. It pops out of the little corner of my abdomen like a little gem. I am somewhat used to having it there now, as in the device protruding, but it still astonishes me when I look in the mirror and the flashbacks stream in about why this device is there. It is such a blessing to have a new lease on life as well as gaining a new quality of life. But it is so twisted how traumatic it is to have gone through with the surgery and realizing what it took to get to this place.


Obviously another big change has taken place. The opportunity to eat more food and more solid foods at that. A lot of people wonder what my diet consists of, especially now. I eat a lot of plant based proteins, mostly ground up because digestion of high fiber foods is very difficult, even now. I still have smoothies and shakes, protein shakes with chick pea, hemp, chia, etc. as well as nut butters and crushed nuts in some bars (Larabars and other natural protein bars). Protein is essential and aids in healing. I eat a lot of eggs because I like them, they are easy to digest, and they have a lot of nutrients that I can absorb. I have gluten free bread, tortillas, and even waffles. I can now enjoy maple syrup as well as fruit spreads, similar to jelly. I am a tortilla and potato chip addict. To add to that, I occasionally can enjoy nachos or a hamburger. Chicken is also an occasional food. Salads and steaks are a no-go because they are so hard to digest. Overall, this is way better than before. It all adds a little variety.


The next change has been my weight. I have held steady since October. I had a terrible bug that cost me a few pounds last month, but I quickly rebounded weight-wise. This is all a good sign according to my doctor and the rep from Medtronic who monitor my device. Remember, full recovery time is one year so full results cannot be determined until then. I hope to add at least five more pounds, but stable is better than losing for sure! I do not feel the need to push, I just listen to my body. As I was told by a doctor not too long ago, "The body is smarter than any scholar or doctor." I believe that to be true 100%.


Energy. I do not and will not ever have the energy or stamina of my peers, but it has gone up considerably. I no longer fall asleep at 7:30p every night out of complete exhaustion and deprivation. I no longer feel my body is weak and hungry when my belly is not. I am able to go a full day without a nap or a few hours on the couch. Not every little task requires a rest break. I will honestly tell you that I do pay when I have done too much. Just as I did before, except now I have this belly still healing so it takes a bit. I just enjoy so much more, sometimes I forget. Can we say that is a bad thing? I think not.


Pain. Oh the pain. It has done a 180 on me. I can now eat a meal without getting full after a few bites. I can make it through a meal without considerable pain I am pushing through or hiding, trying to ignore it. I no longer get horrible, excruciating pain within minutes of a meal. The best part for a vain woman is that my belly is not distended all day long. Bowel movements and other unmentionables are nearly normal with little to no pain. And gas is a distant memory....unless I make a misstep as all of us do in that area.


Sleep. You wouldn't think sleep would be all that different. Oh but it is. I used to wake up two to three times a night to go to the bathroom. Pain and digestion itself would wake me on a regular basis. And the nausea was just ridiculous. I don't know how many nights I lay awake trying to sleep it away. I would toss and turn then move to the couch, possibly a chair. There were so many nights, and days for that matter, I would be so thirsty, but the thought of drinking water made me more nauseous. I can proudly say that most nights now consist of 7 to 8 hours of uninterrupted sleep....whatever that may be to a parent. So much more refreshing than 6 months ago.


Lastly, though, is how I am viewed and treated by the outside world. Being sick in our culture is seen as a weakness. When you are afflicted by an invisible disease, it is really tough. There are no outward signs of said disease so the outside world may accept you for what you say you are or they may think you are overreacting, maybe even exaggerating. Friends and family may have better knowledge of you personally, but even they treat you as they see you by default. The trouble with this is, every one of us is struggling with something, not always physical, so we all need compassion. You just never know what impact you have on someone.


Although many knew I was sick before, it was and is difficult to wrap your mind around. I, myself, am still going through the process of accepting myself for who I am now. It is so hard to live your whole life one way and be loved for that, then suddenly things start to decline like sand falling through an hour glass. All the while, we are all trying to catch the sand to slow time. As the decline continued and continued, it seemed as though people, family and friends, dropped like flies. Many not knowing what to do or say so sheer fear and anxiety keep them away. Some of them no longer enjoying my company because I was no longer able or capable of enjoying and partaking in things that kept us close prior to the decline. Possibly this is not a conscious decision, just one made by continuing the life they had always enjoyed. Some may just be uncomfortable with illness just as they may with drinking or dancing, so it is avoided. All of this is very painful for me, and I am still trying to cope. I try to remind myself it is not malicious. Try connecting the heart to the intellect.


More recently the treatment has changed so much I feel lost in it all. Often left feeling inadequate when moments before I was walking with my head high. 6 months ago you would have caught me on a couch or chair most days. Friends and family would come to my place to spend time with me. That, I appreciated a lot. Many a night spent watching movies, playing card games, listening to music and messing with playlists on our ipods, or simply having good conversation. I would get out and do things, even clean my house, but all of which was so taxing. This device was implanted and suddenly many around me are expecting a recovery from illness as if this were a magic pill.


It is, in a sense, like a magic pill because of the life changes it has made that are so positive. Let's not forget the diseases that lead to this comorbidity along with all of the other disease I have, though. They all need attention to manage them. This umbrella of APS Type II falls in to branches like a family tree. Anchor a falling branch and it flourishes. It becomes a little stronger, but the brace does not fix the branch. I hear things like, "What's your plan now. Work? School?" or "What do you do all day? Lay around. Must be nice." or even "You need to get out more. It's not healthy being at home all the time." Here are my answers: My plan now is exactly this. Continue healing and improving while taking care of my body for optimal use. It is a beautiful temple God gave me and this temple needs no additional wear and tear. School will wait but the knowledge I have from the years I spent in college are priceless. The knowledge and wisdom I have gained in life is priceless. No one can take that from me. As far as what I do all day, the same as any stay at home mom. It is a lot more work than people think. Laying around is not an option. It is nice, however, to have the special time with my amazing son. And on that note, I do get out. I have appointments, school obligations for my son, groceries, outings with my family, long walks, church...shall I say more? I believe all of this is healthy and no one else can determine what is good for me.


It is hurtful to be misunderstood. Then, I step back and think most of us are. Right? No one knows what is going on behind closed doors, inside your mind, or inside your heart. Not everyone knows your past. Many probably don't know one of your deepest, darkest secrets. All of these could be holding incredible joy, stress, pain, sorrow, suffering, anxiety, or numbing. I have become more and more of an introvert as the years have passed. Although, I definitely know I have gained strength, knowledge, and fortitude, I feel like an alien in this world because of the rarity of my situation. Even my husband, the closest to me, doesn't understand a lot and that is not for lack a trying. He doesn't always know what to do and forgets the special needs I sometimes have. This causes me so much anxiety and loneliness. So recently, with the energy I have gained, I decided I want to venture out of my comfort zone.


I always have been ambitious and it drives me crazy to be stagnant. I've thought about getting a part time job to feel a sense of accomplishment at the end of each day or just the social interaction with fellow employees. Then I really think about it and I know I can't. I cannot make a commitment I don't know I can fulfill. But the ache in my heart from trying to grasp all of this novelty in my life needs attention. I have always wanted to help people. It makes me feel good. I was going to school for nursing and psychology. I was a medical assistant along the way. Then I was halted by no fault of my own. The passion doesn't leave. In this big metropolitan area I thought there must be tons of shelters needing volunteers. I used to volunteer serving lunch at my son's school and I enjoyed it. I have been researching and getting advice for the area. I have come across some great opportunities. This is the direction I want to go for now.


Volunteering can have so many benefits. Flexible schedules are part of the appeal for me. I want to try something small before I jump headfirst into commitments of paid employment. Why do it for the money anyway. Our culture is so geared to thinking money is success when I believe I have been successful. My compassion has only intensified. All of the people who walk in to shelters have a story. Women's shelters, homeless shelters- all of these people get there somehow. The stigma of worthless people who get themselves in these situations deserve no help is simply ridiculous. A mother whose husband passed away has no skills because she has two children she was raising while her husband worked. He may not have had benefits or life insurance. She can't get a job or can't afford daycare. She loses her home. Where does she go? A veteran ravaged from war comes home with a changed mind. There is little help for the mentally ill. He tries and tries to maintain a job and a home, but these terrors never leave his mind. They affect his work. He loses his job and loses everything. Still, his mind is tortured. It spirals downward with no treatment. Where does he end up? There are so many scenarios, so many stories, so many who need help or just a smiling face. I want to help. I will help.


Part of the purpose of this blog has always been to help. Help someone like me who was spiraling into this world of disease with no real path laid out. I had no role model, no light at the end of the tunnel guiding me through. I'd research and find little to encourage me or inform me. This journey will not stop. I am not the only one who has these illnesses. I am not the only one so I may not be "rare". I want to help.

12 Weeks Proud

Well folks, I have made it to 12 weeks. I feel like every ache, pain, scar, itch, etc. is all worth it when I down a plate of French fries from In N Out or Red Robin.

I am able to eat a bit more variety these days. I tried P.F. Changs the other day with a cousin of mine. I had the chicken fried rice and it was amazing. No trouble with bloating or distension. I also have been able to eat a family recipe of green chile stew that I love and had to avoid the last several years because it would cause so much pain, bloating, distension, and it felt as if it just sat in my belly for days. No longer :-) And of course, as I mentioned earlier, hamburgers and French fries with no regrets later. I am taken aback at times with how well I handle things that were so frighteningly painful before.

I can't report any weight gain or changes at this time. My appointments are beginning to be further apart. I enjoy that a lot. I will see the gastroenterologist as well as the Medtronic rep who is guiding my doctor through checking the status of and possibly adjusting my gastric stimulator on November 14th. I plan to have a good report.

I will say that I still deal with a lot of pain. There is a lot of cramping as well as continuing incision pain and extreme tenderness around the pocket that holds the device. Most times I eat (at least 98% of the time) it feels like I drank a cold glass of water and went for a quick sprint. It can last anywhere from 30 minutes to a few hours. I was told that is just the stomach itself getting used to moving again and possible getting used to the electrodes. I assume for someone as sick and weakened as I at the time of surgery, it would definitely take a great deal of time to rebound.

Emotionally, I am still on a roller coaster. I am so thankful for this new life. It is so difficult to wake up in the morning and still not feel refreshed. That's an issue I have had for a while and may not be directly linked to the gastroparesis or malnutrition. It is difficult to have that cramping after meals because I wonder if there is something wrong. That is probably a direct reflection of my personality. It is difficult to feel the pain of the surgery and the device in the shower, in bed, as I am dressing, when I tie my shoes, when I sit down.....it could go on. It is just an adjustment. I believe the pain is a way to get me used to the ways I need to modify my movements and actions to accommodate for the device in the long term. If I get in the habit of protecting it and favoring it due to pain now, it will be a habit by the time the pain subsides so I will continue to modify my actions.

As I go around and establish with new doctors in the area I find myself feeling alien in this world. Although many doctors have heard of the device, it is clear in talking to them that they really have a very basic idea of what it is. That carries over into everyday life because most people have no idea what gastroparesis is let alone a gastric stimulator. When I say I have just had surgery three months ago, I am looked at as if I should be back to normal life. Inquisitive eyes follow me often, but never ask any questions. In talking to a friend who has a rare illness that is very different than my own she said she says, "Believe me, it is more awkward for me than you." I found that to be a funny response.

I walk around this thin 30 year old woman. I am often dressed in athletic clothing because of the elastic waste bands and their comfort for my situation. I am picky at the grocery store, picky at restaurants, and often do not accept drinks or snacks at friends or families offer. For those who do not know, I can only imagine what thoughts run through their minds. I feel the need to constantly defend myself or justify my behavior. Then I battle myself thinking I owe them nothing and I have earned my stripes. A Type A people pleaser at its best may not be very conducive to chronic illness and rehabilitation for major injuries.

Ultimately, I have made it this far. There are ups and downs but that's life with or without chronic illness. These battle scars are a reminder of how strong I am physically and mentally. They are a reminder to take it easy or a free pass that I fought and scavenged for and fully deserve. Whatever we face in our days, take time to look back and pat yourself on the back for accomplishments others may not have noticed. Accolades do not always come in the form of trophies or certificates- they come in the form of a satisfied belly after a meal, or the smile on my son's face when we pull up to a pizza place he enjoys. It is great to see the sun rise everyday and know I have another chance to live this life.

Snack For The Soul

When I referred to my surgery date in my last post as my new birthday, I had no idea how deep those feelings would really run. Every day I wake up feeling a little different. Every day there is some flash of novelty and comfort in my new world. Every day I become increasingly more aware of all the gifts that surround us. That all sounds so mushy and cliché, but it is so blatantly true.

I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.

My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.

At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.

All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.

"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.

To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.

Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.

The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.

I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.

My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.

I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.

A Bump In The Road

Life dependent on a durable medical equipment can be tricky.  I am reminded of this on a daily basis while completely everyday tasks, but none compared to what I experienced this past weekend. 

I am a pump patient.  That is diabetes jargon for I use an insulin pump to deliver my insulin throughout the day as opposed to insulin injections with syringes and needles.  The insulin pump is an amazing invention.  It is about the size of a pager.  It has buttons to control its functions similar to that of a pager.  Inside there is a battery for power as well as a reservoir the patient fills with insulin.  The reservoir is connected to some tubing that is connected to an infusion sight on the patient.  An infusion is similar to an IV in that it is a tube inserted into the body, except an infusion for insulin goes into subcutaneous tissue (fat) as opposed to the vein.  The infusion is only changed out every few days so it has made the quality of life for insulin dependent diabetics drastically better. 

Using shots required diabetics to schedule their entire lives around these shots.  There are several different types of insulin that are absorbed differently and can be used for various occasions, but there is always peaks and valleys the patient has to work around.  Meaning food is required during the valleys and activity should be done during peaks to insure the most natural and comfortable outcome. 

An insulin pump, on the other hand, has the potential to eliminate or minimize these peaks and valleys.  This is due to the fact that insulin is delivered in small doses throughout the day.  As a patient with this technology we have the power to tell it what to do and how to do it.  Patients know their bodies better than anyone.  This allows us to live a little more freely, and have our medicine right at the touch of a button.  As you would imagine, not everything is flawless.

This past Friday I changed out my infusion as well as my reservoir on my pump (Medtronic 523).  To me this is always a good feeling because the insulin is fresh and I have the peace of mind knowing I will not have to mess with it for another 72 hours.  This is increasingly harder for me because over the years patients develop scar tissue that can affect absorption in addition to my weight loss it is harder and harder to find good sights.  This particular sight wasn't necessarily comfortable, but I thought I could tough it out for a few days.

A few hours past and I noticed my blood sugars creeping up.  This is not normally a red flag.  Blood sugars fluctuate all the time, especially in woman with hormones fluctuating as well.  A normal blood glucose (sugar) reading is between 80-120 or 70-110 depending on who you ask.  My normal average is in the lower 100s.  By 5:00pm I was 300.  I was definitely feeling it.  My vision was slightly blurred.  I felt very sluggish and heavy.  My hands and legs were starting to get numb.  All signs of high blood sugar.  I told my pump to give me some insulin to bring it down.  That process usually takes 2-4 hours.  Two hours later I check and I am at 250.  Another correction.  An hour later I check, just to see if there is progress being made, and I see 245.

Ugh.  This is very frustrating for a well controlled diabetic who is active and eats well.  These numbers are not something I am used to seeing especially when I have been on point for several days with food, insulin, and activity.  I won't bore you anymore with all the details that go behind it all, but some troubleshooting needed to be done.

I personally have people to contact in extenuating circumstances such as these to prevent a trip to the ER if at all possible.  I am sure most pump patients have similar set ups.  I checked with my professional and throughout the evening we worked on trying to bring my blood sugar down.  Finally, a good old fashioned shot with a syringe and needle did the trick.  We thought possibly the infusion might be to blame.  Sometimes, rarely, the tubing can get kinked.  Sometimes, again rarely, the infusion is in scar tissue and so the insulin is not being absorbed properly.  Whatever the case, it is always safe to redo a sight if unexplained highs are occurring.  That's exactly what I did that night, twice.  Yup, you read that right.  I changed my sight 3 times that day.  Not a fun time, but doable if necessary.

The next morning I woke up in the 170s.  On the rise....again.  A good fasting blood sugar is below 120 for sure, and typically I am there.  Why, then, if I have not eaten badly, I've exercised adequately, and I am not ill or menstruating, is my blood sugar so high?  I checked with my professional again.  At this point even she was at a loss so she advised me to call Medtronic.  I did, immediately.

The representative on the phone was very nice.  She began walking me through various troubleshooting options.  None of which were panning out.  In my head I am starting to think I am either too thin or have too much scar tissue........will I have to stop using the pump?  No, please, no!!!!  She decides to try one last ditch effort at solving our problem.  She suggests I rewind (basically reset) the pump and start fresh.  When I go to remove the reservoir from the pump I notice moisture.  Droplets inside the reservoir as well as it's holding area in the pump.  There should never be moisture in the pump. 

Turns out, the o-rings in the reservoir are faulty.  They are leaking.  Imagine a syringe and how fluid is sucked up into it with a plunger.  At the end of the plunger there are o-rings to prevent leakage from the wrong end of the syringe.  Similar concept in the reservoir.  So, when I was asking my pump to "push" more insulin into the tubing so that it would be "pushed" into my body for absorption the pump was pushing.  As it was pushing, however, the insulin was leaking out the back end rather than being forced through the tubing.  I went nearly 26 hours with very little insulin delivery. 

My reason for sharing this story: I have been a pump patient for over 5 years.  I have never had this happen before.  My professional had not even thought to have me check the reservoir for problems.  I imagine this problem is very uncommon but not impossible.  I know that pump therapy has been amazing for me with very little hassle.  I just want it to be known that these seemingly impossible flaws may be the cause of some unexplained problems.

Lesson learned here: keep a very open mind when troubleshooting.  It doesn't matter how long you have been diabetic.  It doesn't matter how well controlled you may have your disease.  It doesn't matter what type of education you have or how much you know about your disease and the tools you use to control it.  You may be missing something.  And finally, when in doubt, call the manufacturer!!

Lucky for me this event, although scary, was not too bad.  My blood sugar was high but not frighteningly.  It stayed high for some time, but we caught it early.  The worst part was the symptoms of high blood sugars, the stress and doubting on my own part, and the shocking realization that even my pump is not perfect.