Recognizing The Good

  I am so proud. I have been able to get back to a lot of my normal activities since the surgery last Tuesday to replace the battery in my gastric stimulator. Having this thing working again is insane. I barely notice physical feelings from gastroparesis changing, but the underlying things you cannot see are remarkable. I do still feel overly full. That is constant but even moreso after a meal for a few hours. I have had some nausea with regurgitation. Last night I actually threw up twice. Although that sounds bad, it is actually somewhat of a good thing. It means my stomach is churning. Probably because I was so used to it being off, my body is reacting similarly to sea-sickness/ motion-sickness. That will subside. My belly does cramp. Again, that can be a good sign showing that muscles that have been stagnant are moving. just getting tired. I remember these from my last two surgeries and once they subside I am more comfortable. I will always have symptoms of gastroparesis since mine is so severe. That does not mean getting the stimulator or replacing the battery was in vain. There have been notable good signs.

  One of those welcome changes is my blood sugar. I did have a telemed (thank you pandemic) appointment with my endocrinologist last week. She helped me make a few changes, but overall thought I was doing very well considering all things. Our newest change was to give myself insulin for my meals 15-20 minutes after my meal. Most people need it before the meal, but since gastric emptying is delayed it is better to wait. So far that seems successful. But moreover, in general my blood sugar is reacting well to the food and insulin combination. I am not having random high blood sugars as often. That is so nice because high blood sugars do make you feel kind of rotten and the swings from high to low are even more taxing. I have had to lower my background insulin because I am not needing as much. This tells me food is not lingering as long in my stomach and small intestine. Eventhough I am not feeling this happen, my diabetes is welcoming the change.

  A big takeaway from my appointment last week was the praise the doctor gave me. Somehow in chronic illness it is easy to place blame on yourself. You feel like you brought this upon yourself. You also feel guilty for burdening those around you. And beyond all of that, as the disease progresses you feel as if you pushed it along as opposed to fighting it. To hear a doctor say she appreciated my tenacity and positive attitude spoke volumes. She expressed how pleased it makes her that I am on top of things and constantly learning and adapting. She touted my intelligence. All of this means so much. The day to day, minute to minute challenge can leave you feeling defeated as I have mentioned about myself in the past. Having someone who deals with a lot of people in the diabetes community recognize me for being a "great patient" makes me feel as if, as usual, I am too hard on myself on a daily basis. Have we mentioned Type A personality??

  The next thing I am hoping to see, since my blood sugars have changed, is my other blood work improving. My main highlight is cholesterol. With gastroparesis and all the comorbidities I literally cannot even think about eating animal fat without getting sick. Fat in itself is incredibly hard to digest, especially "bad" fats. On top of that, meat is incredibly hard to digest, particularly red meat. Yet, somehow my cholesterol is through the roof. My theory is a two fold. One part is that I take a lot of supplements to help with nutrition. Some supplements can give false results. Since my last blood test I have stopped taking those supplements for a short time. The second part of my theory is that cholesterol or triglyceride blood work needs to be done on an empty stomach. Although I have tried to go in on"good" stomach days thinking my belly may be empty, I bet it was not. If you drink even a tiny sip of orange juice, cholesterol will show up in your blood so imagine a full stomach. We will repeat the tests in a few weeks. I am hopeful we will get better results. No matter the situation the doctor does not want to put me on statins considering the fact that I am young, thin, exercise, and eat minimal fat. She suggested a supplement called Cholestoff, but I have not gone out and gotten it.

  In terms of the surgery itself, I am making good progress. I am able to do some chair cardio workouts and a little stretching. The wound is healing beautifully. And pain is decreasing daily. My belly is still a little swollen, but I seem to remember that part taking the longest to go away. I get tired easy. But I am sleeping through the night, which is awesome. I began physical therapy for my foot last week. None of the work they had me do caused any pain near the surgery site on my abdomen. I am proud of myself for all of this. I am helping my body heal by showing it some love and it is responding. Score.

  To talk about my foot for a moment, I'm going to jump subjects. I am actually writing this minutes before my next appointment. I am still in a walking boot for a while, but I can take off my boot for no impact work. I have done squats on a Total Gym machine, rode an incumbent bike, and today I will work on some resistance training. As much as I dislike physical therapy, I welcome the exercise and recognize its importance in the healing process., as well as preventing future injury. This is just another baby step towards recovery. The interesting thing is that I will see the podiatrist on October 6th to see if I can possible get out of the boot then I will jump in the car to head a couple hours north for a follow-up with my surgeon. Busy day, but killing two birds with one stone. I am encouraged I will get good news.

  As I write this I am feeling a little crappy from a sleepless night with some vomiting. I am feeling a little emotional for no discernable reason. But at the same time I am so happy with where I am. I feel like I am making good progress without pushing myself too hard. I am healing better than I expected. God is really working on me today. He has given me such a hard day yet so much positivity to balance it. I know tomorrow will be better than today. That makes things better. I am seeing what could be when all of this recovery is over. That is exciting. We all knew this was coming. It is just so difficult when you are in the middle of the whirlwind to believe it will ever end.

Acceptance is Key

  Today is 7 days out from my surgery to replace the battery in my gastric stimulator. It was such a difficult decision to make, but I have not questioned it since. I know I made the best decision for my lifestyle. I needed to gain better control of my brittle Type I diabetes while still being able to stay active. I was certain I was doing the right thing, but was waiting to feel that "buyers' remorse" type regret. I was afraid I would wake up from surgery and start thinking of the "shoulda done"s. That has not happened once which is such a relief!

  The dynamic of gastroparesis and diabetes is that of a toxic relationship. One entity trying to dominate the other. I have always been active. I was taught healthy eating at a young age and that just got more intense once I was diagnosed with diabetes. As a Type I we are able to eat like anyone else, we just give ourselves insulin to cover the carbohydrates in food. I began to limit simple sugars like candy once I was diagnosed, but we all should do that anyway. When being educated on insulin dosing and carb counting you learn there are different carbs like complex or simple. Simple carbs go through your body quickly causing a quick spike in blood sugar followed by a quick drop. Complex carbs are slow to digest so they help maintain a more even blood sugar. Think about pouring plain table sugar through a straw. It's like a pixie stick. Quick. Then think about adding crumbled oats to that table sugar and you would imagine it would disrupt the flow taking the sugar a longer amount of time to clear the straw. Same thing with your digestive system.

  Now, usually insulin starts to act within 15 minutes and continues working for about 2 hours. That would be great if you had a meal with protein and complex carbs like eggs with whole wheat toast. That would make a graph of your blood sugars look like rolling hills. If you ate Lucky Charms instead you would see the Rocky Mountains on that graph. The idea is to keep the rolling hills. So what happens when your body does not digest in the normal fashion? Mountains, valleys, hills, the works. Gastroparesis starts to win the battle over insulin.

  With gastroparesis food stays in my stomach for days. Yes, I said days. On top of that, sometimes things get pushed through by other food, sometimes it travels at a semi-normal speed, and sometimes nothing moves. Liquids are the easiest thing to move. We all know that fiber, fat, and protein slow the digestion process. Most healthy diets use them to help maintain steady blood sugars, even in non-diabetics. Typically a diabetic diet is high fiber, high protein, and good fats. Gastroparesis has limited me to 5 grams of fat per day, 10-15 grams of protein, and 10-15 grams of fiber per day. THAT IS NOTHING. Yet my stomach still is not moving food. So what does this mean?

  This means I am eating a diet that is 100% against the diabetic diet or the "Lauren" diet I used to love. I am eating only simple sugars with very little protein or fiber. But remember, my belly is not moving or digesting. I cannot give myself insulin right before I eat. It usually needs to be after because my body doesn't even begin to absorb the sugar right away. Usually 1-2 hours after I give myself insulin for a meal my numbers are fairly good. But wait an hour beyond that, then the next and suddenly my blood sugar is through the roof. Why? Well, because I gave myself insulin for the meal I was eating, not for the food that is in my belly. When food moves from the stomach to the small intestine, that is where most of the sugar is absorbed. Without knowing exactly what is moving from one organ to the next it is incredibly hard to predict what may be absorbed. All I know is what I just ate. Sound confusing? IT IS! And the worst part, no doctor can give you advice. They can monitor you, but they cannot tell you how to predict something or how to safely prevent more damage. Gut motility disorders are not well understood.

  When the battery went out on the gastric stimulator I had no idea. What did start to happen, and should have been my first clue, was my blood sugar would drop way too low after eating then spike way too high 3-4 hours later, remaining high for hours. If I tried to correct, it would plummet. I thought I was stressed out and adrenaline was causing some wacky things. Not the case. I was not digesting, moving, or absorbing properly. I could tell I was struggling to digest because the easiest things were starting to feel like bricks in my belly. I have said this before, but it feels like I eat an entire fast food meal plus a large pizza all by myself. I almost feel the fullness all the way in my throat. I don't even remember what it feels like to eat a regular meal and just feel satisfied. I always feel deprived, yet always feel incredibly full.

  As you can imagine, this wears on my emotions. Food is such an integral part of our culture. We have feasts for big holidays and cook-outs or gatherings to celebrate anything we can imagine. We meet up for lunch, dinner, or drinks just to catch up with a friend. Food is everywhere. As this disease progresses, and it is happening faster as I age, I am having to limit more and more while simplifying more and more. I spent hours on the computer last night looking up recipe ideas and anything else to help me feel more "normal". Of course, this is not the first time I have done this kind of research. Since so little is understood about motility disorders there is little to be found.

  I have discovered little tricks along the way. One of my tricks is exercise. More important is exercise involving twisting or crunching always involving the use of gravity to help break the food down while shaking it through my belly into the small intestine. Walking, yoga, pilates and similar exercises are my go to. The problem is I am having to do these things more than I want now. Most days I end up working out 2-3 times per day for at least 30 minutes. As much as I like to be active I also want to be lazy. On top of that, the exercise burns a lot of calories I just tried to consume. So I eat then exercise or just not eat at all. Neither of those options are good, mentally or physically. 

  I spent a lot of last night in tears. Then my ninja girl comes out and says "I will conquer this." Then I get mad. And the cycle often continues, but it ALWAYS passes. I just explained to my husband that I am envious of those of you who can eat regularly. I don't think I remember what a normal gut feels like. I want to run and jump and swim and hike. But I can't. Not just because of the gastroparesis,  but the other diseases limit me also. I want to be able to eat at a restaurant or leave the house without having to pack my own food. I miss baked goods so much. It is this all encompassing deprivation.

  My positive self comes out when I start to spiral like this. I have options. I spent today making chicken noodle soup, chicken with rice soup, and peeled and sliced potatoes I bake with a tiny amount of olive oil. My parents generously drove 2 hours to go to Whole Foods and grab me some unsweetened peanut butter and dairy free yogurt. I have plenty of frozen fruit I can use to make smoothies. I can tolerate eggs now that the battery has been replaced. Unfortunately, that is the extent of the excitement. Notice there is nothing crunchy on this list. Also, the soups do not have any vegetables because I cannot tolerate them. No beef or pork. No spices. No condiments really. So, I have options but not many. A human being instinctively needs to chomp. Eating pureed foods, soups, and baked potatoes does not give you that crunch. It seems like even if I do all the right things I will still feel deprived. It is overwhelming and unfair. Who said life was fair, right?

  The one tool I hang on to is gratitude. I do thank my body for allowing me to wake up everyday. I thank my body for the ability to move. I am proud of myself for continuing to fight this battle. I am proud of myself for finding something to smile or laugh about EVERYDAY. I hold onto my intention for every action. Sometimes my intention for a morning workout is simply to ground myself and not focus on the benefits it is having on the disease I fight. Sometimes my intention for an afternoon unplugged is to be present with my son. Most days my intention is to be me. I have so much to be thankful for. I complain. I whine. But I know my struggles are minuscule compared to so many others. As I enter this new chapter my intention is to accept. One of the biggest causes for depression is not accepting your challenges. I will learn and adapt as the diseases progress. I remind myself that I have faced similar challenges in the past and made it through. There is always a rainbow at the end of a storm. Usually that rainbow is that the challenge made me a better person. This too will make me stronger. I may desire more than I have, but when I look at how strong this has all made me I know the grass is not always greener on the other side.

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.

The Slump

The dreaded slump. I have not written here or even on my personal journal for a few months now. I have had a difficult spell. I had no way to express it. I had no way to release it. I am still trying to regain my footing. I am constantly told I am brave for being candid with my writing. Although, I do not see this as bravery, I see it as helping others. None of us live in a perfect life. No one person is in total bliss every single day. I am here to allow people to open up, ask for help, seek knowledge, and to find pride in who you are, good and bad. I will tell my story behind this screen, all alone in comfort and find solace in the end. That's how brave I am, in hiding.


Many people suffer migraines. Some suffer what doctors call "chronic migraines". No matter which someone experiences, it is never good. Since I was a young child I had no real idea what a "migraine" was or how it felt. I had been told, probably because at the time it was age appropriate, that a migraine was like the worst headache you can imagine. I had had headaches and thought they were bad so I assumed people were being dramatic if they said they had migraines. I was taught in a very strong fashion that I was very wrong and uncompassionate.


For several years now, going back to when I was seen at the Mayo Clinic in 2008 and before, I had had some bad headaches. I would sometimes feel a stabbing pain in the left side of my head. I often saw black spots or bright flashes in my vision. My neck would get stiff. I would complain to doctors, but was always told they were tension headaches. Being ill and stressed was causing these headaches so I needed to relax. The other symptoms were brushed off. I told myself I was overreacting. That is, until August 2012.


I was getting ready to volunteer at my sons school as a requirement of all parents. Only an hour a week in the lunch room and my hours were covered throughout the year. The thought of this was frightening to me. I am not the most outgoing person in the world, nor do I handle new people and situations smoothly. Inside I am a mess. While washing dishes all of a sudden like lightening a bright painful white light hit me like a camera flash, then sudden sharp pains throughout my head. I blinked and blinked while squinting as you would for a camera flash, but it didn't help. That headache lasted over a week and I eventually ended up in the emergency room. I had suffered a migraine. My neurologist determined I had been suffering migraines for years. The seizures took the spotlight, but migraines are also treated with seizure medications sometimes so the migraines had been pushed under the rug. I have now gotten to know my triggers, the feeling of onset, and how to push through. Mine have become chronic, meaning I have them for days or weeks on end some occasions but always more than half the month I have a strong migraine. No one who suffers migraines is being dramatic. They are horrible.


Last May my son had his First Holy Communion. Family was coming in to town and there were activities non-stop for about five days. About two to three weeks before, a dull migraine had come and gone, but just as everyone showed up I was in the worst pain. The kind of pain that leaves you nauseous. That pain never subsided even after everyone had gone and things had calmed down. It was soon summer so obligations tapered off as well. Nothing touched the pain. By the first or second day of July, I was in an ER. Sometimes the oral medications do not work for me due to absorption. IV medications are always a last resort. My neurologist and I spent all summer and early fall practicing trial and error, still to no avail. At this point we are waiting on Botox injections.


She explained to me that the Botox is a diluted, slightly different version of the commonly known Botox for cosmetic use. Injections are given around the hairline, some near the crown of the head, and some in the back of the neck near the base of the skull. This is to relax the muscles in an attempt to break the migraine cycle. Migraines are similar to seizures in terms of the activity of the nerves throughout the brain. These nerves cause muscles around the head to contract but struggle to relax. The nerves are also hyperactive, trying to send messages properly. The Botox helps calm things down. Due to logistics I have yet to experience this treatment. With that being said, I have had a really hard time opening up because I feel so crappy.


I hate to be that person who is a complainer, "Oh woe is me" all the time. I feel like I am that person.  I tend to bury my head in the sand when things get tough. It is human nature to alert others of our suffering, but no one needs an update everyday if the complaints are the same. As an example with no disrespect, similar to a man with a cold. Sometimes I feel as if I have no light words to contribute to a conversation so I choose to hide the deep stuff. Hence my retreat.


In September I was set up with a new primary care doctor. She is wonderful. She decided to refer me to all the specialists I do not already see on a regular basis, gynecology and a urologist to follow my IC. Both of which I have avoided for obvious reasons. First came the gynecologist. While doing a routine exam she came across something that alarmed her. She sent me for labs and asked that I return the following day for an ultrasound. I was told that next day my labs showed possible polycystic ovarian syndrome. I have a friend I watched go through the diagnosis about a decade ago which seemed so difficult and scary. I was crushed. The ultrasound was done, but it seemed to take a little bit. As I was walking to check out, I could hear the doctor and ultrasound tech talking about me with concern in their voices. I returned the following day (are you exhausted yet) as requested again by the doctor. At that appointment I was told they found a mass. They found a tumor. A brick straight to the face, bam, and I froze. She explained the details and what would be coming in the following several weeks. At that time I was told a uterine biopsy was needed. In the office right then and there they took a tissue sample from my uterus. A little painful but tolerable. Then, wait for results.


I soon was seeing a gynecologist who was well versed in surgeries to remove cysts and masses possibly including the entire ovary. He was such a gentle soul who reminded me of a mix between Elmer Fudd and the Pillsbury Doughboy. The biopsy had come back fine so an ovarian biopsy was not needed at that time. He explained that this mass was a "complex mass" the size of a golf ball on my right ovary. It was a tumor. He decided to try some simple progesterone pills. This is a hormone that helps regulate menstrual cycles and many other womanly needs. The idea was to see if my own body would break up the "complex mass" on its own. I impatiently waited the five to six weeks to return for another ultrasound. If the mass had not budged or had grown it would need to be surgically removed and biopsied.


About six weeks after hearing about all of this for the first time, I was back in his office sweating it out. He greeted me as welcoming as the first time. With his squinty eyes and a contagious smile he said, "It's gone. Most of it has broken up so there is no need to follow it unless you experience problems." Like a balloon deflating I relaxed and my mind just floated. I did ask about the PCOS and he told me the mass was affecting my labs. I had no other symptoms so "No. Ya don't" with that same smile. I said my "thank you" and "so long" and hightailed right out of that office. Something huge had been lifted off me and I was ready to conquer the world again....as soon as my energy returns and the migraines slow. Haha


And then....you knew the and then was coming. In late October, early November my mouth felt like I had been punched. I brushed it off for days thinking I did something strange and it would work itself out like a crick in the neck. Well, days passed and there was no relief. I asked my husband, a man that steers away from dentists at all costs, to look inside my mouth. He said, "You need to call a dentist. Something doesn't look right." I put it off for several hours because I was sure it was nothing, but I eventually broke. They saw me within an hour and within 30 seconds the dentist said, "you're going to need surgery". My lower gums and lip had detached from my teeth. If I were to leave it alone I would lose those teeth. Now, I am the kind of person who flosses and brushes every day. I go to the dentist every six months for cleanings. Surgery?! What?!


I procrastinated but went to the surgeon's, periodontist's, office the next day. When I first sat down in his chair he said, "We need to do this today". I had to call my husband at work, he had to get our son out of school and meet me at the office. The periodontist performed a gum graft. He took tissue from the roof of my mouth and placed it across my bottom front four teeth and brought the lip in to reattach it. I lost count of shots, time, and stitches. I was told that my connective tissue inside my mouth finally gave. My body could no longer fight there. I lived on a soft foods diet more restricted than my gastroparesis diet. By Thanksgiving I called to ask if I could eat some more solid food. Thank goodness he said I could have what I could tolerate. I still had trouble talking, smiling, laughing, and puckering my lips but who cared at that point.


November was a month of rebuilding. My body had been through so much, it needed to calm down. I had a minimal amount of appointments and tests so I was able to decompress. With my mouth recovering I was forced to relax. Who'd imagine I need that? My son had the whole week off for Thanksgiving. It was really nice. We had slumber parties in the living room, watching movies and playing games until we crashed. Thanksgiving day was full of blessings. An impromptu dinner was made throughout the day for my family and me to enjoy. I had had so many migraines and belly aches that I had no intention of cooking. I cannot eat what everyone else can so it was a lot of work for just one child-sized meal. My boys would get a traditional Thanksgiving at my cousins' house in the evening so I had no obligation. The sun rose that Thursday and I decided to make the most out of the holiday. By 2pm I had a full meal of meatloaf (easily broken down meat for digestion), roasted rosemary and garlic potatoes, green beans, and corn bread. We bought a chocolate cream pie for my boys. It felt so comforting not exhausting. We later went to my cousins' where there was turkey and stuffing and pies and drinks and family. Just a beautiful day of happiness.


December rolled in with Christmas in tow. My endocrinologist has been pressuring me to get a continuous glucose monitor. I put it off because I had one for a year or two about eight years ago and I hated it. It beeps at all hours of the night and day. It was painful to insert and to have under my skin. The adhesive tape was brutal and I had to change it too often. So his suggestion fell on deaf ears. Over the summer, with the terrible, unbreakable migraine, my blood sugar was all over the place. Lows sometimes in the low 30s upper 20s (severely dangerous) and highs up in the mid 300s (only makes headaches worse) were starting to frustrate me. I had the experience of watching someone go through the early stages of the monitor I wanted and eventually decided it was worth a shot. I had been told within the past few months that my insurance wouldn't cover it. When I actually called the company, Dexcom, they took care of it and found out that my pharmacy benefits were going to cover it. I received my Dexcom early that next week. I am actually pretty ecstatic about it. I knew I needed better tracking of my blood sugars, but another apparatus just made me hate this situation more. Once I got over that mental hump, I was good to go. So, by the time I got it I was elated. That was only on December 16th so I am working on balancing what I've got on my body. That in itself, was the best Christmas gift I could imagine. Health is priceless.



With all these non-stop unexpected blows, my psyche is ravaged. I have been an emotional wreck for a time I cannot even count. Lonliness.  I only lived in New Mexico for the past 30 years. I have not worked in four years. I have not been to school in over six years. There is limited opportunities for me to make friends, especially at this age. I know only family in Texas so I have no fall backs. Many of my family members live further than I am comfortable driving, although it is all in the Dallas/Ft. Worth area. They have full lives with their own schedules and plans, as they have a right. I am not the type to invite myself to join anything. I am not the type to talk small talk with a stranger. Not feeling comfortable opening my life up to many leaves me in a tight situation. Guilt. I lay in pain on the couch with no energy while my son wants to ride his scooter or go to the mall. My husband gets off work to get home to a dog who needs a short walk, a son full of energy and conversation, and a wife lethargic on the sofa. I can't travel. I can't be very spontaneous. I can't eat at just any ol' restaurant. I feel as though I drag them and everyone around me down. No one will admit how annoying or frustrating it is, but it must be. Anger. Every time things seem to be stabilizing, a ball drops. I want to be better for my family so I will try harder tomorrow. Tomorrow finds a new ailment. Frustration. See above, need I say more. And the fight for happiness. Who wants to be miserable? I want to find peace so happiness can flow freely. Sadness. In the depths the what-ifs always show their ugly faces. If I had been allowed to finish college I would be doing the work that is done to me so often. If I could make my own money independently we would be so much better off and the pressure would lighten on my husband. If I was healthier I could do all the activities you see a mom do with her child in a TV movie. If, if, if. If I could travel I wouldn't feel so stifled. I wouldn't feel so lonely. Grief. In all those what-ifs there is a sense of grief. In my mind I am the person I set out to be and always was, in realty that girl is gone. The activities, the food, the freedom, the physical strength and stamina, the availability of continued higher education, etc. is all gone. It is a mourning as if someone has died. And someone did. But someone new emerged.

Someone new emerged. Amazing words. A new perspective. Now I am kinder, more knowledgeable, more compassionate, more giving, more practical, more open-minded, more determined than ever before, and a better mother because I know what I could be missing out on. I work just as hard seeking out knowledge as if I had been able to continue higher education, and my quest never ends. I hunger for information, any not just health. I love to learn and it is not necessary to be in a classroom to do so. I am finding new talents, for example, writing. I am learning a whole new level of patience, but believe that will be an ongoing process because perfection is constantly changing. Speaking of perfection, I am working on loosing up a bit. Being a perfectionist is impossible. There is no room for perfectionism within the life I lead. Why should I waste so much energy beating myself up? This new person that has emerged is equally new to me. Years pass and I am still working on acceptance. I am still getting to know me, Lauren, and finding myself in the chaos. I don't think my dust has settled, but I look back and think "how long are you gonna take to catch up". Haha


And yet, I read this and know deep in my heart that I am not the only one who feels this way. We all have different lives and different perspectives. We all have our own joys and pains. We all have our skeletons and demons. We all are a constant work in progress. As a child it is never a thought in your mind. For myself, I knew as a child that things would constantly be changing as I got older so I embraced the change. Some time in high school or college or later, we all unintentionally dig our heels into the ground and think we no longer have to change. We look back and want what we had and hold on to every last fiber as long as we can...sometimes too long. For myself, I feel it has been to long. I seek my inner child. I read this and realize, I am still being too hard on myself. I am being a hypocrite when I say perfection is unattainable and still think thoughts of how I NEED to be instead of letting go and letting these words sink in. This is part of the purpose of this blog.


It is an open journal to the masses. When I put it that way it frightens me to share so many issues, thoughts, and feelings. I sought out something similar to this when my knowledge and emotions were so low with my illnesses. I wanted validation for my devastation and fear. I decided to write this blog as I walk through life so if in some way, some how someone finds comfort in this then I am doing what I intend to do. Please know that you are never alone. Know that someone else shares whatever pain or joy you do, you just don't know it. Find peace in that somehow. I will work on doing the same.

Surfing The Wave

Welcome back to the dramatic life of Lauren the Great. I recently talked about my one year birthday with the Enterra gastric stimulator. This device is starting to spread throughout the nation, and I am so glad for that opportunity. So many people need this device, whether it be to gain weight or lose weight. Yes, they can actually adjust it to help with obesity. I have heard my hospital has implanted a good amount since my own. I recently spoke with my diabetic educator in New Mexico and she said they are implanting them there as well. That warms my heart more than you can imagine. I like to stroke my ego and say that I promoted it a lot which gained recognition for Medtronic, the manufacturer. Maybe soon it will be considered a treatment option as opposed to a humanitarian device. The rest of my post may seem to counteract much of what I have talked about previously, but no one really can understand the immense impact it has had on my life as well as my family's.


I realize it has been some time since I last posted and I definitely fell off my routine. Again, life happens as well as emotions. This summer has been difficult with my health and hotter than a Texas summer (pun intended). Late April or early May a migraine struck. I have suffered migraines for years, but they seem to be progressing. I used to think people were being dramatic when they said they had one. It seemed like every time some one had a headache they would refer to it as a migraine. I have seen true sufferers and some dramatizations. Either way, mine I now believe and have drastically progressed in the last two years. I eventually, after many attempts of at home treatments doctor recommended, gave in and went to the emergency room for IV medications, also doctor recommended. That helped ease it a bit but within days it roared its ugly head more so than the dull ache I still had after the IV. Since then some days are dull and some days are debilitating, more often the latter. The heat certainly doesn't help.


There are so many triggers for a migraine and everyone has a different experience or reaction. I, myself, had no idea what my triggers were due to my denial of migraines existing. This was a test-in-the making that hit like a brick wall. I tried hydrating. I tried rest in a dark room, which actually helps me at least rest a little more comfortably. I knew my eye glass prescription was old because I was always squinting so I went to an ophthalmologist.  I need him more than an optometrist because he can check for diabetes complications of the eye, more specifically retinopathy. Luckily, I am good in that department. My prescription did change just a bit, but he also recognized some rigidity in my lenses. See, your eyes have lenses that are flexible so you can look far away and then look down at your phone or a book and your lenses adjust as you change your perception. Mine doesn't move that quickly. As a 31 year old woman, I need bifocals or trifocals for the no line lenses. I prefer to use glasses as opposed to contacts because I take them off throughout the day pretty often. It is also less maintenance in my opinion. Back to triggers, I tried cutting out foods I felt affected me. Lotions, laundry detergent, air fresheners as well because the smells can be a trigger. I avoid the sun. I consciously try not to squint or move too quickly. I try to keep my neck and back in the least taxing positions or movements. It seems like they are all triggers, including stress.


My neurologist has been seeing me frequently throughout the summer to try to get ahold of this unbreakable trend. At first she thought that we possibly went down on a medication, in an attempt to slowly change to a new medication seizure-wise, too quickly which can upset your nerves. A slight adjustment here, a slight adjustment there. That did not break this chronic migraine. We attempted emergency type medications. We moved on to some injectable medications because we thought absorption had been a factor, could still be. None of which seemed to help. Actually, the injectable gave me a rare side effect of severe drops in my blood sugar. Leave it to my body to head to the rarity and the blood sugar factor in a diabetic is not good. At my last appointment we agreed on a new approach, Botox, but she also told me some news I had and have trouble dealing with emotionally and physically.


In New Mexico I had been given "life timelines" several times. I had also been told I have an autonomic nervous system disorder. I always beat my "timelines" and will continue to break barriers. It did hit me a little harder this time around. I think I had myself on cloud nine and was in denial a bit. I was so glad to be in a new place with more food and life options, and I believed the stimulator's help with food intake would help my whole body. I still believe it is because it is blatantly obvious in terms of energy and symptoms due to gastroparesis. Hearing a "timeline" now knocked me down. Granted, hers was much longer than any previous and vague. It is bugging me a bit still, but I know my determination and tenacity. She has been talking about neuropathy over the last year, but never referring to it as "diabetic neuropathy". She explained to my husband that my neuropathy would cause personality changes, memory loss, and more that I cannot remember, but I can't totally contribute it to what she said. At this last appointment focused on my migraines and seizures, I brought up the fact that I have noticed some symptoms I couldn't explain.


For years, really around the time I got diabetes, I have had numbness and tingling in my extremities. When I would mention it, doctors and nutritionist would brush it off, saying it was too early in the disease to have diabetic neuropathy. In addition, my blood sugar control was too tight to allow the damage. Lately my balance is off. I do yoga about three times a week and am suddenly unable to do moves I have always conquered. That is frustrating and a little alarming. I have also been noticing more memory loss and trouble comprehending things I never struggled with before. Additionally, at the ER I had trouble doing the neurological exercises they often use for neurology patients. Days before, in a discussion with my husband, I was trying to count to four on my fingers. For some reason my hand was not cooperating. He had to physically move my fingers to show four. I felt silly about it all, but she was very serious. She explained that the neuropathy I have is an autonomic nervous system disorder and it is called peripheral neuropathy. This is not diabetic neuropathy, although I am at risk for that as well. Let's compare them along with fibromyalgia as well as I can with my limited knowledge.


Peripheral neuropathy affects the entire nervous system. It can be connected to diabetes, but mine was triggered at the on-set of diabetes or before. We believe before because pain and fatigue have been an issue for me for over a decade. It can be caused by many different factors which make it hard to pin point. Some of them include autoimmune diseases (I was diagnosed with Hashimoto's thyroiditis when I was 13, then the snowball began), diabetes, medications, alcoholism, trauma, pressure on a nerve, tumors, infections, vitamin deficiencies, hypothyroid, and connective tissue diseases. Many of which I have or had come across throughout my life. Determining the cause is not as important as trying to manage it. The damaged nerves can cause numbness, weakness, and pain throughout the body. The nerves in the peripheral nervous system or central nervous system send messages from the brain and spinal cord to all other parts of your body and back again. It can affect sensory nerves that receive messages like pain, heat, or even touch. It can affect your autonomic nervous system controlling most of the smooth muscles such as those involved with breathing, heart rate, as well as digestion. It can also affect motor nerves controlling how your muscles move. This will cause a wide range of symptoms. Mine include pain, weakness, fatigue, digestion problems, blood pressure and heart rate (mine are super low), lack of coordination, intolerance to hot or cold temperatures, and sensitivity to touch. These symptoms wax and wane, but reading my posts throughout gives you a good idea of the constant symptoms. Mine happens to be polyneuropathy meaning it affects more than one nerve.


Diabetic neuropathy is usually caused by high blood sugars over time. These blood sugars damage the nerves. Most commonly, it affects hands and feet. This cause pain and/or numbness. It can move on to other parts of the body such as the digestive tract, causing gastroparesis, bowel problems, urinary tract problems, and even move onto the heart, sometimes fatal. It can be avoided by managing blood sugars tightly. Some diabetics never suffer nerve damage.


Fibromyalgia can also be set off by trauma or infections and can be genetic. Researchers believe repeated nerve stimulation causes changes of chemicals in the brain. The abnormal increases in these chemicals may signal pain. This can also cause the brain to make a memory of pain signals often causing the body to be more sensitive to pain. Again, symptoms are similar to peripheral neuropathy, yet there is no damage to the nerves, only sensitivity. Women are more commonly affected. It can be genetic or related to a rheumatic disease, such as lupus or rheumatoid arthritis. Complications are usually lack of sleep due to pain, frustration, depression and anxiety from a misunderstood condition, and trouble focusing or completing tasks. It is often referred to as "fibro fog". So, you can see the connection with all three conditions.


It is certain that mine is peripheral neuropathy. That terrifies me. There is nothing they can do about it. Some medications manage the pain, tingling, or burning. I certainly do not expect a magic pill to fix all. I would prefer to not take any medications at all! She did some routine exercises in her office as well. I realized many of the tests I previously completed with little or no difficulty, I suddenly had trouble completing. In fact, on a funny note...or funny to me, I will absolutely fail a field sobriety check if ever pulled over for suspicion of DUI (I do not drink and haven't had the experience). I tried and tried to walk a straight line, one foot in front of the other, and stumble time and time again until she just moved me on to something else. I walk with a different gait than most people. I am not pigeon toed and have never had an unusual gait before. Now, I walk with my feet in a "V" shape. That, she explained, is unknowingly trying to keep balance. The memory and comprehension are just bonuses. Again, she repeated there is nothing she can do but monitor it. It will only progress.


At this point it is important to stay alert to the symptoms. Because I am struggling with recognizing symptoms and they are only progressing she suggested a caretaker. There is no need for a live-in caretaker or even a 24 hour caretaker. I just need someone to check in with me and be available for the tough days or emergencies. I am often alone with my son so he has been taught who to call, how, and when. He will not be subjected to being my caretaker. He is a kid who needs to be a kid. I am sad he has to witness and live this volatile life with me. It has its bonuses, however.


He is wise beyond his years. He is compassionate, empathetic, and caring. He is sensitive, which can cause problems especially for a child who is eight years old. He actually comes home from school with his feelings hurt by something a peer said or did during the day. He can't understand how they can be so mean. He can't understand why they do so many things they do. It is just not in his realm of comprehension. It is amazing how he thinks about the world. He can teach us so much. He sees the world in such a magical way.


I saw my primary care physician just today. I lost weight, which makes me mad. I have been eating plenty. With the summer heat I have been enjoying vegan ice cream on a very regular basis as well as these giant soft, gluten free, vegan chocolate chip cookies. Both have always been a weakness my entire life and now I have found them in my diet allowances. Woohoo. I cannot believe I am still struggling with weight. An issue many people would love to have, but not to the point of being underweight. Believe it or not, under weight people feel similar self consciousness as over weight people. My primary is concerned about my heart rate and blood pressure. I am now instructed to monitor my blood pressure and heart rate much like I do my blood sugars. I have been having these rushes of faintness. I have not lost consciousness completely and I am glad for that advantage. This comes with cold sweats and anxiety or panic. I think my blood sugar is low because the symptoms are similar, but when I check it is fine. She believes this is a result of low blood pressure, and the symptoms come on so quickly because my blood pressure has dropped quickly. I have been worried it may trigger a seizure. Luckily that has not been the case. She said there is a few medications that can help raise blood pressure, but I would like to avoid additional medications. She still suggested what she called " a benign" medication meaning less side effects. We will see how this turns out. I pray no medication is needed and lifestyle changes can possibly help.


With all this I have been so overwhelmed. The fear of what my body is doing on the inside. So many what if's. I have relaxed a great deal just having a tangible reason for what is happening. The what if's are lessening knowing that there is no concrete path. Everyone is affected differently. A doctor is only as smart as the information they have learned. The body is so much more complicated. The body knows itself better than any doctor. As I mentioned earlier, I have broken barriers doctors said would not happen. I have a determination to move forward. I see no reason why I should be concerned about leaving this earth when I know all of us only get so many trips around the sun. Enjoy the sun while we have it, right? My mission drove me to pistachios, ice cream, and puffs which are similar to Cheetos puffs (my old fave). My stomach can only fit so much as anyone else's, so work with what we got. Food, sometimes, is a fix all. The management will continue and life goes on. Focus on life not the management of the unmentionables. I need to give the diseases a collective name like......Bertha, and only refer to them as that name. "Bertha is on fire today" or "Bertha has been out of sight for a while" or "eh, Bertha has crashed my party" or happily "I beat Bertha to the punch today". Yep, from now on. Make light of things. Laughter is the best medicine. That and distraction. Loving it.


I do want to stress that this blog is not only about me. I share the information I know and my experiences. This blog is to connect with people. It is for me to gain knowledge from others. It is to share our experiences and learn. It is a place to be vulnerable yet vindicated. It is therapeutic for me. I don't share a lot of information vocally, but can lay it all out here. I don't have a road map for life. This is where I help guide my thoughts and actions. It is meant to bring joy and be open to new perspectives. I certainly do not want or mean to be a downer and believe me when I say I am happy overall. I have a great support system. I laugh and enjoy my son, music, and sports (yay football season, basketball soon to come). Everyone gets down. Everyone gets worrisome news. Life is about surfing the wave.

Pushing The Limits

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

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

Mountains Climbed

Nine Months has gone by since my new life began. I have proudly called it my second birthday many times and truly mean it. July 31, 2013 I got an Enterra gastric stimulator implanted. A device that has forever changed my life. I had been suffering a severe case of gastroparesis that was not responding to treatment. I went from a slim frame to a skeletal frame, losing more than 30 total pounds throughout the course of the disease. It was recommended for the umpteenth time that I go to Johns Hopkins University Medical Center. After a consultation in my hometown for a feeding tube determined my comorbidities would be exacerbated, even life threatening with forced nutrition, the surgeon had an 'out-of-the-box' idea I had never heard. Leaving that appointment with little information other than an "We'll be in touch after some research..." I was devastated. I had been weakening and weakening physically, but more so emotionally. A week later, a doctor had been chosen in Dallas, TX they were sure could help. But I also had to go to Johns Hopkins in a last ditch effort to save my life.


Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.


This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.


Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.


A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.


Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.


Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.


I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.

The pain at the site had now turned into just slight discomfort. That's normal with jeans considering none of us ever find the perfect fit. I danced around with my son for a little while and the jeans still felt alright. I made him take a picture out of sheer glee. I have not challenged myself to wearing them all day, but I will get there. I felt so accomplished, my mind has been reeling about what else I may be able to do. This morning a challenge was calling my name.


I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.


Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.


The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.


I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?