Osteoporosis Won't Break Me

  Osteoporosis. That is an interesting word to hear at 37 years old. That's what I got. I had to do a bone density scan last week. Not just because my broken foot is taking its sweet time to heal, but I am also very thin, malnourished, and I have ovarian failure. Yup. You read that right too. Ovarian failure. These are two things someone in their thirties rarely has to think about. This is now what I face. Although a little frightening, I see this challenge as a learning opportunity. It isn't a great deal of fun for a man to read about ovaries so I will keep that short and simple.

  For years I have had irregular periods. For a few years I was treated for ovarian cysts and that worked out great. When we moved from a metropolitan area in Texas to a rural area of New Mexico I kind of brushed it off not wanting to find an OB-GYN because, let's face it, who does? After 2 years and a serious lack of periods I finally broke down. I would love not to have one, but I am smart enough to know it is not good to not have them. There is not a chance of pregnancy. I had my tubes tied back in 2011 due to my fragile health. I found an OB-GYN. After a detailed exam and discussion she knew things might be more complicated. She ran some blood work and called back a few weeks later to notify me that I have ovarian failure. What's that?

  Well, I had been warned since my early thirties that many auto-immune diseases cause early menopause. My assumption was that may be what is causing me to be irregular. I have never heard of ovarian failure.  The Mayo Clinic refers to it as ovarian insufficiency. That word again, "insufficiency". Seems to be one of my running themes. Basically, my ovaries are not producing enough estrogen and/or eggs. This is not normal for women under 40. It is different from menopause in that women with ovarian failure or insufficiency can have periods on and off and possibly even get pregnant during this time (not me). Women who have premature menopause  stop having periods completely. Glad we got that sorted out. So the next question is what do we do about that?

  The doctor talked about hormone therapy and a few other things. All of which I listened to but barely understood. This is not in my wheel house and I have never even researched them. I am such an information junkie, I am usually ahead of the curve. She then explained she wanted to consult with an endocrinologist (specializes in hormone and hormone glands) as well as my primary care physician to go over options for any possible treatment. Her concern, of course, was starting something that may be dangerous considering my complex medical history. She heard I broke some bones in my foot so she decided to have a bone density scan done.

  I had to go to the local hospital. All diagnostic imaging is done there in our small town. That is a scary experience during COVID and I have been there several times since I broke my foot for different scans. A side note to this is the woman who checked me in was not wearing a mask. It is state mandated and it is a hospital. That made me uncomfortable. The scan took hardly any time. She did have to take my official height. I am proud to say I am officially 5'3". I am the tall one in my family haha Due to the pandemic, results get to the doctors faster. Radiologists are not having to do as much since healthcare is focused on necessity right now. The very next day the OB-GYN called to let me know I have osteoporosis.

  Now that was not what I was expecting. I am pretty good at being prepared for a new diagnosis. My gut instincts are good at knowing even before I consciously know myself.  Not this time. Because it is not something that was on my radar and no one in my family has really talked about it, I honestly had no concrete idea on what the different bone diseases/disorders meant. She explained and I listened, but I can't relay what she said. I don't think it registered at the time. Again, she wanted to consult with my endo and primary care doctor before starting any treatment, but some treatment is needed. I do take a calcium supplement and vitamin D because I do not absorb them naturally. She believes some hormone treatment may be necessary at this point.

  Osteoporosis literally means porous bone. Bones do have a blood supply. They also have two very important cells called osteoblasts and osteoclasts. The osteoblasts break bones down. Osteoclasts rebuild. Diabetics already produce more osteoblasts than osteoclasts which is why it takes longer for our bones to heal along with poor circulation. In osteoporosis there are also more osteoblasts than osteoclasts causing the body to lose more bone than it can reproduce. This makes the bones porous and brittle. Sometimes something as little as a sneeze or minor bump can cause a bone to break. The main concerns are the spine, hips, and wrists. I have read that even just sitting there a vertebrae may crumble. How do you protect yourself when you are a 37 year old mother?

  Strength training, impact exercises, and nutrition. So, we know I can only do so much nutrition wise. I eat as healthy as I can within my limitations. My body does not absorb all nutrients. I take supplements to help, but it is not a fix all. I am limited in protein intake due to my gastroparesis. Most of us know, protein is crucial for repair and development of the body. That one gets me. I have always exercised. In the past ten years it has really only consisted of long walks and yoga. Since my broken foot I have had to become more creative. I do a lot of floor or chair work which really strengthens your arms, abs, butt, hips, and back. Little did I know, that strength training is exactly what is necessary for osteoporosis. Score one for Lauren. The impact exercises will come in due time. They are things like walking, running, and jumping. But at least I know. Now, I can be sure to do a variety of exercises even beyond my foot injury. 

  I have mentioned this before, but I found some great content on YouTube for "hurt foot" workouts. Donovan Green (Dr. Oz's trainer) and Caroline Jordan are my two favorites. They make chair cardio videos. Caroline also makes floor barre and total body non-weight bearing workouts. I have come to really enjoy them. I used to be a long distance runner and basketball player. These workouts get me to that level of intensity. Who would've thought? Walking and yoga are peaceful, but nothing beats a runners' high. I am strengthening muscles I didn't know I had yet are so crucial to preventing injury. They have even gotten my shoulder feeling great. I had a labral tear last August and have struggled through physical therapy and more to rehab. These exercises really strengthen your posture muscles in turn strengthening your shoulders. I highly suggest you try it before you knock it, especially during this pandemic. It will reduce anxiety, help you strengthen, possibly lose weight (if needed), and as my son puts it, "It's somethin' to do". I recruited him for my evening routines. It has changed my life for the better.

  That is what is so cool. We all say, "there is always a rainbow at the end of a storm" or "the sun will come out tomorrow" yet it is difficult to really internalize. We also know there is power in positive thinking. Well, the shoulder injury and then the foot injury seemed horrible, but have now proven to actually be a blessing. They have made me really slow down. I tend to push myself beyond my limits then pay for it. These injuries have reset my mind reminding me to not push so hard. They also brought me to new exercises. I learned I really enjoy things I normally passed up. That has made me rethink trying other new things in other aspects of my life, These two trainers are incredible at educating while not judging. They are motivational. I have learned to be compassionate with myself. I am constantly reminded to be grateful for how incredible the human body is. It is one of the rare things that can heal and get stronger. I am better at pushing away negativity. I am better at focusing on my health. That helps all else fall in to place. 

  As I sit here with my foot propped up and no end in sight, I do feel thankful. I am excited for the day I can walk again because that just means I can add more to my arsenal. I will never get bored with the variety of exercises I can do. I may not be competing anymore, but I think I am stronger than when I was. I talk about exercise so much because I love it. Movement is medicine. Having a bad day> Exercise and get endorphines. Feeling tired? Exercise and get endorphines. Bored? Don't eat. Get up and move. The endorphine rush is real. The best natural remedy on earth. As long as you are doing it right and for the right reasons, there are only good side effects. Even as sick as I am, I think I was born with far too much energy and I have to get it out some way. 

So, welcome osteoporosis and ovarian failure. I am here to fight and win. 

   It has been a few years since I last posted. I really needed some support when I first starting going through this crazy journey of multiple illnesses stacking up on one another eventually being found to have APS Type II which is a fancy name for "my immune system prefers to attack me". I could find information on each disease. I could find blogs and stories of people who had theses diseases. But I could not find someone who had faced so much all at once. I could not see a light at the end of all these scary doctor appointments and tests and hospitalizations. I felt lost and alone, and understandably scared. I started this blog because it was what I was looking to find. I knew that there must be more people going through this, yet no one was talking.
 
   A few years into writing, and being very vulnerable, I was told by someone that the information I was sharing would be better put in a journal. I got another comment or two after that as well. It started to make me feel bad. Just two or three tiny statements had this enormous affect on me. I shut down. I no longer wanted to share my story. I read non-fiction all the time. I love learning the ins and outs of anybody's stories. I thought that if I shared I would help someone else. Then these statements made me feel as if I were doing something wrong.

   I started this blog with the intention of it eventually turning into a book. From the time I was first diagnosed with Type I Diabetes I was told I needed to write a book. As things played out for the next decade, the inquiries about a book kept flowing in. I continue to get encouraged to write a book. "It will help doctors." or "someone just like you needs this right now." or "it is so incredible, it is almost unbelievable." So, here I am again at my keyboard. Whether or not I ever turn my story into a book, I do not know. What I do know is, if I can impact someone I need to act.

   Without going back detail by detail, I just want to re-introduce myself. I am a 37 year old wife and mother. I grew up in rural NM. At the age of 12 or 13 I was diagnosed with Hashimoto's Thyroiditis. That is similar to having a slow thyroid except the thyroid is actually a goiter or inflamed. My father passed away from Type I Diabetes when I was very young. At the age of 20 I was found to have the disease as well. I was in college studying psychology at the time. My goal was to help special needs individuals. That diagnosis made me take a bit of a turn and I decided to also study nursing wanting to eventually become a diabetic educator. Suddenly I began to have another problem. This time it was interstitial cystitis. A condition that prevents your bladder from maintaining its mucus layer leading to ulcers and burns inside your bladder. I began medication and started to feel better. I was told, however, that fertility was going to be an issue. Not being married and only being 21, that information went in one ear and out the other. I did have a long term boyfriend, but I am a total Type A personality so babies were not on my mind.
 
   Jokes on me. I found out I was pregnant at 22. I was warned the pregnancy was not good. I continued my studies and had a healthy baby boy nine months later. Things seemed to be stabilizing. I had good blood sugar control and my thyroid medication was on point. I no longer needed my bladder medication because the IC had gone into remission. None of this stopped me from striving to reach my goal of a career in medicine. Until one fateful day my boyfriend, now husband, found me face down in the closet at 6am. I had had a seizure. Mind you, we thought we knew all of my health issues and epilepsy was not in the mix. The seizures became more frequent and continually unexplained. After about a year, we decided to move back to our rural hometown for a slower paced life hoping that would help. Unfortunately it didn't.

   As time went on the snowball rolled.  I was sent to the Mayo Clinic twice which only gave us a clear diagnosis of epilepsy. That made it necessary for more testing in our local region. I was found to have full blown Celiac disease which lead to a diagnosis of pernicious anemia, chronic atrophic gastritis, alkaline stomach, and gastroparesis. I was sent to a rheumatologist who diagnosed Lupus, but things still didn't seem right. To me or my doctors. I was sent to an immunologist. They found an array of allergies. Then suddenly, an answer.

   I was diagnosed with Schmidt's syndrome or Auto-immune Polyendocrine Syndrome Type II. That's a fancy way of saying I have an overactive immune system that is attacking my body in multiple places. This made the myriad of diagnoses come together. But as all diseases do, they progressed. I finally agreed to go to Johns-Hopkins University. From there we were told my stomach had come to a halt and I needed a device called a gastric stimulator to survive.

  Six weeks later we were in Dallas preparing for this new chapter. I got the stimulator implanted and began gaining a little strength and weight. My weight had gotten as low as 82 lbs. We spent four years in TX so I could be close to the doctors that implanted the device. Through those four years there were hospitalizations and a few bumps in the road, most of which are documented in previous posts. We eventually made the decision to move back to NM because I was becoming overwhelmed with being the patient, not feeling like a human. We chose a place on a major freeway so access to doctors would be easier because, let's face it, I do need monitoring. I also made sure there was someone nearby that could mange my stimulator.

   The past four years have played out fairly smooth compared to my roller coaster decade and a half prior. Things have progressed as most diseases do. My stomach is no longer really responding to the stimulator. The battery will last about a year or two more if I am lucky. At that point, I will have to decide whether to replace the battery or remove the device all together. Because it has been so long (2013) since it was implanted I am worried I do not remember what it felt like to live without it. Through a lot of long, hard talks with my husband I have decided to let it die. I will hopefully be mentally strong enough to leave the device in for two to three months nonfunctional. This may give me a better idea of how much of a difference the stimulator has on me. If I decide to live without it, we can then remove it.

   To be honest, my knee-jerk reaction is to take it out. The battery pack is under my skin in a pocket above the muscles. The leads go through the muscle to connect to the stomach. The battery pack takes up the entire left lower quadrant of my abdomen. For someone who is 5'3" on a good day and hangs out around 100 lbs right now, that is a lot of space. With my diabetes I have an insulin pump which is connected to the body by an infusion, similar to IV's except it is just in the fatty tissue not any veins. It needing to be in fatty tissue limits your sight options to the abdomen, love handles, buttocks, inner thighs, or back of the arm. A continuous glucose monitor, Dexcom, is also something that needs to be stuck into fatty tissue to read blood sugars through interstitial fluid in fatty tissue. All that being said, I have very little fat so I have my Dexcom on the right lower quadrant of my abdomen. That leaves the mini love handles for my pump infusions. The Dexcom and insulin pump infusions create scar tissue. Scar tissue does not absorb insulin properly and does not allow the Dexcom to have accurate numbers. We have tried other parts of my body, but these are the only places that work. Problem is, the scar tissue is building up and I have no where else to go. If I had that left lower quadrant of my abdomen available for my diabetes management devices it would help.

   The conundrum here is blood sugar versus nutrition and weight. With the paralysis of my stomach and the multitude of other digestive issues, food is not absorbed properly. This wreaks havoc on my blood sugar. A normal stomach pumps about 16-24 times per minute acting like a blender with your food and passing it on to the small intestine. If I am lucky, mine will do that in a day. Food does not travel consistently or fluidly. Sugar is absorb through your small intestine so not knowing when the food actually will get to the small intestine causes some issues when trying to manage my blood sugars. Add that to the scar tissue I have building up causing trouble with insulin absorption and diabetes management is nearly impossible. I do what I can with diet and exercise, but a gastroparesis diet is completely opposite of a diabetic diet.

   It is recommended that people get around 25 grams of fiber per day. Fat is ok, but best through plants and nuts. And protein recommendation is about 40 grams. Every body is different, this is just general. For diabetics, if you follow this diet with very little sugar you can be smooth sailing. Now for gastroparesis it is recommended to keep fiber less than 10 grams per day. Same goes for protein. And fat should stay around 5 grams per day. WHAT?! Yeah. Think about that one for a second. One egg is roughly 6 grams of protein. One slice of bread typically has anywhere from 2-5 grams of fat. A banana has about 3 grams of fiber. Now, imagine your typical day and your typical diet. Seems nearly impossible to meet all these bench marks or limits. There you have it. What would you do?

  This has just been a brief re-introducing of my health background. Let's remember, my health does not define me. Reading this is daunting and it all sounds depressing and scary. The truth is, you're right. But I am not living in a pity party. I still have a million blessings all around. I still have the crazy mom days. I still find a way to exercise EVERYDAY because I love it. It makes me feel better. It makes me happy. And it makes me feel proud and accomplished when I have conquered something. I love to read. I like crime shows and comedy specials and sports. My son is autistic and teaches me so much. We have a crazy little 9 month old Australian Shepherd mix who makes us laugh everyday.

   In an effort to not make this post any longer I will sign off for the day. My intention is to return to writing. I would love to share with you my antics, knowledge, health, and personal growth through this journey I call life. I will leave you with this little nugget. I have become friends (in my mind) with a health and fitness coach on YouTube named Caroline Jordan. She says "Smiling is an advanced move if you feel the need to kick it up a notch". I feel the need, ladies and gentlemen.

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.

Sweet 16

Today marks 16 sweet weeks after surgery to implant the Enterra, a gastric stimulator. I have to say it has been on my mind all day long just how far I have come in these 16 weeks. Then I start to think how far I have come since this time last year. Although this path has been long and often painful emotionally and physically, as I look back I can see how every person, every doctor, every step along the way has been so crucial in my journey to this point.

I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo  Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.

To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.

I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.

Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.

All in all, I can genuinely say this is my sweet 16!

Shine

One step at a time and we find our way.  As many of you know, I have been dealing with unknowns for years now.  More recently, about 4 or 5 months ago, my condition and weight became a much greater concern for my doctors and myself.  The doctors started to push again for more answers.  It began with an idea to insert a feeding tube because most of my symptoms throughout my body were flaring up in addition to continued weight loss on an already very thin body.  The feeding tube turned out to be a no-go but that got the ball rolling in other directions.  A referral to Johns Hopkins Medical Center in Baltimore, Maryland with the #3 leading gastroenterologist/ functional medicine doctor in the country along with a referral to an internal medicine doctor/ gastroenterologist in Dallas, TX to be evaluated for a gastric stimulator.  I have trudged my way through this jungle of unknowns and we finally have a clear view, I am so proud to announce.

I was worried that I would not be able to make my uncle's memorial services after his death last month because I was feeling so awful and so weak.  God has His hand on everything.  The Dallas gastroenterologist called just days before the services and wanted to begin the testing necessary to be approved for the gastric stimulator.  I was able to attend my uncle's service as well as take care of the testing.  "What did the testing show?", you might be saying.  Well, I am in need of the gastric stimulator.  After fasting for more than 12 hours, I still had food in my stomach when he tried to conduct an endoscopy (most people move food from their stomach to the small intestine in 30-90 minutes).  A Smart Pill study was conducted as well.  It showed that food stayed in my stomach for 17 hours or more.  When the results were reviewed I was able to come home, just in time to prepare for Baltimore.

About a week after returning from Texas, I was headed in Baltimore's direction with high anxiety about Johns Hopkins and what this doctor would say.  His name is Gerard Mullin.  He wrote a book, Inside Tract, that was recommended to me a few years back.  He is a functional medicine doctor, which means he uses not only western medicine but also nutritional and holistic treatments as well.  I was afraid he was going to offer me some outrageous diet that would be impossible to adhere to in rural America or that something even more remarkable would be recommended.  To my surprise, he agreed with the path I am on.  He agreed with the Dallas doctor saying, "The gastric stimulator is a must." He went on to offer a recommendation that I see a naturopathic doctor as well as a nutritionist specially trained in diabetics and gastroparetics.  His explanation was, food stays in my stomach so long without the aid of stomach acid or any enzymes to break it down or kill bacteria.  The food ferments in my stomach before moving on to my small intestine, carrying dangerous bacteria.  The goal is to balance out the bacteria in my gut all together and with that I should feel better on a day to day basis.

So, here I am.  Five years after being sent to the Mayo Clinic thinking I was only a Type I diabetic.  Five years after thinking that everyone around me, including my doctors, were being dramatic about my health.  Five years after being terrified by hearing the words "Mayo Clinic", thinking only people who are near death go there.  I was wrong.  I was ignoring many symptoms and trying to push through.  I was the dramatic one thinking only people near death are seen at the Mayo Clinic.  Five years of diagnosis on top of diagnosis on top of life style changes and more life style changes.  Five years after thinking no one would figure out what was wrong until it was too late.  Well, guess what!  We have answers.  Not just partial answers, but the full picture is finally in view.  The full picture is now in view AND all the specialists, with all their egos, agree.  Now, I can exhale and it is such a relief!

The end result? Can you relate to any of this?  We can help each other.
I am Lauren.
I am 30 years old.
I have Autoimmune Polyendocrine Syndrome Type II (Schmidt Syndrome).
I have Hashimoto's Thyroiditis treated with hormone replacement medications.
I have Type I diabetes treated with insulin through an insulin pump.
I have Interstitial Cystitis in remission currently.
I have Epilepsy treated with anti-convulsants and natural remedies.
I have Celiac Disease treated with a strict gluten free diet.
I have Undifferentiated Connective Tissue disease treated with an antimalarial.
I have Pernicious Anemia treated with B-12 injections and an ulcer preventing medication.
I have pancreatic insufficiency treated with digestive enzymes.
I have gastroparesis currently being treated with Erythromycin, but soon to be treated by the gastric stimulator.
I have inflammatory bowel disease (not currently labeled as Crohn's or Ulcerative Colitis) currently being treated with pain management due to it likely being caused by the lack of digestion in my upper digestive tract.
I have an autonomic nervous system disorder treated with anti-convulsants as well.
I have a husband and a beautiful son.
I enjoy music, the outdoors, and family.
Learning is a passion.
I like to read.
Finding the good in every person comes naturally along with naivety, but I wouldn't have it any other way.
I am Lauren.

We have answers.  We have direction.  We have something tangible to hold on to and move forward.  I feel like I can finally accept what is going on.  I feel like I can relax and let the doctors take over.  I can settle in to a new normal.  Life is ever changing, but a life style is the hardest thing to change.  I feel ready to take on the world and hopeful that my strong mind will strengthen my body as we begin new treatment.  I feel empowered.  Five years ago, getting to the bottom of this seemed so far off, impossible really.  I struggled, I suffered, I whined and complained, I had melt-downs, I denied, I kept going, and I finally feel myself starting to shine through again.

This little light of mine
I'm gonna let it shine
Let it shine
Let it shine
Let it shine

You're So Sweet

The last few months (who am I kidding, years) have been rough.  The snowball only seems to be growing bigger, and I seem to be getting smaller and weaker trying to hold it back.  Recently, I have had some set backs, partly dealing with life and partly dealing with my illnesses.  I have openly blogged about the "life" issues so I should quickly fill you in on the health side of things.

In October I began seeing a new neurologist because I continue to have unexplainable symptoms my other specialists, mainly my rheumatologist and endocrinologist, wanted to look in to.  My primary referred me to someone who is fairly close and highly recommended so I jumped at the opportunity.  My prior neurologist rarely did any type of examination, based everything solely on what I told him, and his answer to everything was increasing my anti-convulsant medications.  I have to admit I was terrified to see a new doctor.

With every new doctor it is like a blind date.  Will this person be compassionate?  Will this person be a good listener?  Will this person have a big ego?  Will this person take into account the whole picture?  What tests will this person want to run?  Is this person the right choice?  I went in with my husband, an open mind, and mentally prepared for anything and everything I have been through in the past.  To my surprise, this neurologist is unlike any other I had seen in the past.  He went through my entire medical history (I brought a file cabinet's worth).  He listened to not only myself but my husband as well.  He examined me.  Then came his thoughts.

It seems to be a dysfunction of the autonomic nervous system.  He said he did not have the technology to test for the actual disorder, but they have the technology at the Mayo Clinic if that is something we want to look into for the future.  For the time being, he gave me a pamphlet on fibromyalgia.  He told me in reading the information, I would probably find myself thinking, "It's like I am reading a book written about me".  Then he began talking treatment.  At that point I stopped him.

In the past I had been complaining of the symptoms to a primary care physician.  At the time, she nearly jumped with excitement and said, "I have something that will fix that" and she quickly scribbled a prescription for Lyrica.  I began taking it.  I felt agitated.  I felt swollen all over.  I felt weighed down.........But it helped with the symptoms.  I remember an aunt asking why they hadn't tested for fibromyalgia, but I was disgusted by the idea.  In my head fibromyalgia was an excuse diagnosis for lazy people who wanted to complain about phantom pain.  I was numb, tingling, and achy all over.  Sometimes my feet would feel like they were on fire and all I could do was rub them back and forth over the carpet gently to get some relief.  I would have sleep disturbances.  It just didn't seem to fit what I thought of fibromyalgia.  Plus, even though the Lyrica was helping the burning in my feet it was adding to all the other symptoms.  I thought Lyrica was THE treatment for fibromyalgia.

He explained in a little more detail what his thoughts were, and again mentioned the Mayo Clinic for further testing if we wished to do so.  He then calmed me down by starting me on a low dose of an actual nerve pain medication.  He told me to report back to him and we could slowly go up in dose if necessary and if it helped.  I left the office feeling a little hopeful in that this guy seemed to have a plan, compassion, and thought outside the box.  I also left feeling like a fool who had just been played being told I was getting treated for fibromyalgia (a made up disease).  I felt like a hypochondriac (because of my own ignorance, I know that now).  Then I started reading the pamphlet and he was right. 

It read me like a book.  It talked about the numbness and tingling.  It talked about the burning sensation sometimes combined with a cooling sensation.  It talked about sleep disturbances.  It went into how it affects your digestive system and your bladder function.  Then it went into the biology behind it all, and it made even more sense to me.  Once, we got home I looked up the disorder he was talking about that the Mayo Clinic had technology to diagnose.  I realized why he hadn't just written me a referral to the Mayo Clinic then.

Autonomic Nervous System Disorder (ANSD), also called dysautonomia, is quite similar to fibrolmyalgia.  It is a dysfunction of the nervous system that can trick the brain.  The major difference in the two disorders is that ANSD actually causes nerve damage whereas fibromyalgia has no record or research showing progression or nerve damage, just dysfunction.  Here's the clinger (and why an instant referral had not been written) the only way to treat ANSD is pain management along with treating the underlying cause (if the doctor can pinpoint it).  Pain management for ANSD is the same as fibromyalgia treatment.  So, no rush because the outcome will be the same for the moment.  I am sure in time, if he truly becomes concerned with damage being caused he will push a little more for me to go to the Mayo Clinic.  His exact words as we left his office were, "We don't want to do too much at once.  One foot in front of the other and we will slowly break down the wall."  I like that thinking.

That has been a lot to take in.  I actually haven't even talked much about it to anybody or even explained it in detail.  My belly is constantly giving me trouble and last week I ended up with a stomach flu (shortly after just having strep).  Then, my blood sugar starts going crazy.  To keep this post as minimal as possible, I went through three infusion sets for my insulin pump in one day.  Problem being, the catheter is getting kinked.  I do not have enough fatty tissue for the 6mm catheter to go in to.  The manufacturer of my pump recommended I contact my health care professional to talk about alternatives.  Luckily, I had an appointment with my Diabetic Educator/ Nutritionist today. 

I go into the appointment prepared with my log book in hand and running through everything that has gone on since I have seen her so that we can put all the pieces of the puzzle together.  Her suggestion and we literally came down to our "all else fails" plan, a j-tube aka feeding tube.  Due to all my illnesses, take into account my medication and the medication schedule, along with my ability to take in food- the amount as well as how often, my weight diminishing leaving me no place to put my insulin pump, and the precise amounts of insulin I need (I am seriously sensitive to it) we need to think about by-passing my stomach and putting nutrition straight into my small intestine.

Let's not get too dramatic here.  This is not a permanent feeding tube (as far as I know, I haven't looked into it and the appointment was just a few hours ago).  This is a port, essentially, that will allow me to have my normal 3 meals a day, but this port will also allow me to supplement my food intake between meals without affecting my medications or other treatments.  Also, on days when I am not able to take in any food, this will allow me to get nutrition without torturing myself by forcing food into an already uncomfortable belly.  Her goal is to add weight which will give me strength and energy and a place to put my pump without the fear of not absorbing the insulin.

So, WOW, right?!  But my attitude remains positive for many reasons.  One, God has me in his hands.  Two, my beautiful son.  Three, a comment someone made to me yesterday.  The heart of this whole blog.

There is a man around our small town who is smiley and friendly.  You can tell he is a little off though.  I worked part time at a bank when I was first put on disability.  He would frequent the bank.  He is always very nice.  He tries to be charming, but I do have to say it comes off a little creepy.  You can tell he means well though.  Recently, I started noticing him going to my church.  Yesterday he greeted me as I came in.  He offered me a piece of candy which I politely declined.  He insisted but I explained I could not have candy.  His follow up question, of course, was if I was diabetic. I confirmed.  He then leaned in and said, "You know why you're diabetic?" I waited.  He said, "because you're so sweet."  I told him thank you and quickly sat down thinking how uncomfortable that encounter was.  As the church service went on it began to hit me.  He is right.  I am diabetic because I am so sweet, and that is something to be proud of.

I face all these struggles every single day.  Mine are mostly health struggles.  But I would not have been given this life if it weren't meant to be.  God knows I can handle this.  God gave me gifts that I may not see through the struggles but He is showing me that He believes in me.  I see that if I were not sick I would still be this Type A over-achiever.  I bet I would be hard to handle (as if I am not now).  My ego would be enormous and I would look down at all the "average" people in disgust as if I were something great.  I would not be the mother or the wife I have become.  I would not be as compassionate.  I would be more bitter and less forgiving.  I would not be who I am today.  So, he was right. 

I am so sweet!

-keep in mind I am no expert and have not fully researched the new information my doctors have given me so it may not all be accurate. Please, see your doctor for more accurate information.

another day another stomach ache

This week has been interesting.  Lots of information, lots of speculation, lots of changes, and still lots of smiles.  First of all, I was awakened in the middle of the night to what I am sure is a mouse in the wall between our bedroom closet and our bathroom.  SCARY!  Mice carry disease and that terrifies me LOL This is our first home so I am a little clueless as how to take care of this pest.  I do not want an infestation.  Advice anyone?  Cats are not an option in our household.  It did lead to some interesting pillow talk, trying to figure out what that little creature could have to do so busy in the middle of the night.  We think he is building a city.

I watched an interview with Emmitt Smith yesterday.  I am a lifelong Cowboy fan and love me some Emmitt.  He talked about how he used to meditate before games to envision the great run, the touchdown, the good block, and the win.  I joked with my husband and said I was going to envision today being a good day.  I envisioned my morning run going smoothly without me having to stop because of getting sick.  I envisioned getting dressed in regular clothes with no pain.  I envisioned being hungry for meals.  I went to bed with a smile on my face ready to face what I had envisioned.

I woke up this morning feeling motivated.  I set out for my run and made it almost all the way through before my stomach decided it no longer wanted what was inside.  A typical event in my daily life these days.  I rushed to the bathroom, dealt with it, got in a nice shower, and tried to relax away the pain.  I got myself ready.  I put on my makeup and did my hair with a smile on my face.  Today is going to be a good day.  I then chose my outfit.

I picked a cute tank top and a pair of jeans.  Although all of my jeans at this point are baggy, I rarely get to wear a pair because the pressure of the waistband hurts.  I have been wearing many elastic waistband outfits lately, but long for the wardrobe that just sits in my closet, waiting to be worn.  Our car is in the shop right now so I had to drive my husband to work.  I put on my clothes and topped it off with some perfume.  Feeling pretty, just a little achy, we headed out the door. 

The second I sit down in the driver's seat (I have regained driving privileges), the pain and pressure shoots through my abdomen.  GGRRR!!  After the 5 minute drive to the pharmacy where he works, it was obvious I would not be able to wear jeans today.  I had them unbuttoned and unzipped before we got out of our own driveway.

So, here I sit at home today.  The first day out of the week I have no doctor appointments or weigh ins or paperwork to deal with, so I plan on resting until my little man gets out of school.  I changed into my elastic band lounge pants for relief.  With a sigh, I looked in the mirror.  At least the cute tank I picked out goes with these pants, and my hair and makeup are still good.  So there!  I'll just expand my wardrobe (no pun intended) to included varying types of elastic waisted pants.  Maybe denim, buttons, and zippers are overrated anyway.

I have an appointment in a nearby town with a gastroenterologist.  My local doctors fear I have Ulcerative Colitis or Crohn's disease.  Both (surprise, surprise) autoimmune disease of the intestines.  I am excited to get information and answers.  I pray for relief.  I fear, like many of the conditions I have, the treatment options will be greatly limited due to contraindications of other illnesses or meds I am currently dealing with. 

I received a comment from a cousin asking if any doctor has stopped to think there may be one big underlying cause to this cluster of diseases that seem so relentless.  Unfortunately, even the Mayo Clinic was left clueless.  I get many comments that someday I will make somebody very rich when they figure it out and publish my case in a medical journal.  I also get asked about research constantly.  No one has stepped up.  No one has decided to take this on and get to the bottom of it.  I have actually been turned away many times due to the complexity of the situation. Each doctor and each specialist focuses solely on their specialty and recommend that someone take an thorough look.  My primary doctor is a Godsend, but is left dumbfounded.  I am hopeful this blog will end the cycle.

I am excited for this day still.  My son has been promised a snow cone if he gets a sticker for good behavior at school today.  I am a bit of a stickler for junk food so he is very excited!  Tomorrow morning he has his very first soccer game.  Actually, a double header.  My husband and I were basketball players and I am a runner.  Soccer is a whole new world for us, but our little man LOVES it.  Seeing the joy in his face is the best feeling in the world.  Finally, on Sunday the Cowboys start off their NFL season with a the new coach.  Let's hope this season is better than the last few.  I think family time, movies, soccer, and football are just what I need.  Now, time for a nap!