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.

Get 'er Done

  How amazing life can be. In the span of hours or minutes or even seconds you can go from the highest of highs to the lowest of lows. The trick is, ride the highs through the lows. The momentum from the high will often carry you through the lows. That's how I like to roll. Like any human being, I am not always perfect. Can you believe that?!

  Yesterday was a day to remember for sure. As most of you know, I am recovering from a foot injury. It has been four months now that I have been in a boot and completely non-weight bearing. I did manage to graduate from a tall boot to a short boot, but most would be healed by now. Not Lauren. So, yesterday morning I had a check-up. I was nervous hoping I could make a move forward, but prepared to hear I wasn't ready yet. To my surprise, I am now officially allowed to go without crutches. I still have to wear a boot for a while, but I can bear weight. It was such a feeling of gratitude, excitement, accomplishment, and all of the above. I also get to start physical therapy. Very light physical therapy, but I get to start. Baby steps towards success. Pun fully intended.

  I then had an appointment about 2 hours away with my general surgeon who monitors my gastric stimulator. It gave me a few hours to eat lunch, get a little bit of exercise and get things together. I was assuming not much had changed. The stimulator is turned all the way up so I knew there was going to be no adjustments. I also knew that my last stimulator battery lasted about 4 years. I have had this one about 2 1/2 so we knew it was just a matter of time, especially with the settings all maxed out. I am not sure exactly what I expected.

  As we have all become accustomed to, during COVID social interactions are being kept to a minimum so I have to enter all these appointments alone. This is a major struggle for me. I am a total introvert and horrible with small talk. I have social and generalized anxiety so sometimes it is almost paralyzing. That was where my focus was yesterday. My husband is a great buffer. He is a people person and a charmer. I just contribute to the conversation when I can otherwise I stay focused in on the issue at hand. My surgeon is a talker. How was I going to be able to be screened for COVID, enter the office and check in with a different person, be taken back by a nurse, and see the doctor without my anxiety taking control? I was giving myself out loud pep talks the whole way. My husband just kept telling me it would be over soon.

  We get to the office and I bravely made my way to the front entrance hobbling on my newly usable booted foot. I made it in, was quickly checked in, then quickly taken back to a room. Luckily, they are all comfortable with me and know my history so it wasn't as bad as my anxiety makes me think it may be. When the doctor finally came in she got her little device all ready, set up shop on my belly, and instantly said, "Yup. It's dead." I had no response. She stepped back and asked "What would you like to do?" My mind and body went into a small tornado of thoughts and emotions.

  We had talked in a previous appointment about what to do when the battery died. I need more surface area on abdomen to place my insulin pump and continuous glucose meter. The stimulator is about the size of a hockey puck on the lower left quadrant of my abdomen. It sticks out and sometimes hits my hip bone in funny places making it uncomfortable. I can't sleep on my belly and sleeping on my left side can get awkward. Because it was maxed out and I was still only getting very little relief from the gastroparesis I genuinely just wanted to take it out. The conclusion we came to at that previous appointment was to let it die, keep it in for 6 weeks or so and see how I felt after that just in case I was unaware of any benefits it may be having on me. At yesterday's appointment it showed that it died right about the time the world shut down, mid March to early April.

  Due to the timing she said, "Well, it has been a few months so what do you think?" Now, remember I had just gotten the news I was allowed to weight bear so I was on cloud nine not ready to come down. She then decided to talk this out with me to help organize my thoughts. It was at that moment that I think she realized I was better when I had that moral support of my husband or family. She went into what my options would be so that my decision would be a fully informed one. Here's what she laid out for me.

  First option is to remove the stimulator all together. If we did that she would simply remove the device, but leave the leads inside my body. Because they are connected to my stomach lining it is dangerous to try to remove them. It may perforate the stomach allowing sepsis to occur. There would be caps she could place at the end, but with no battery power there is no risk of shocking. I would still not be able to have MRI's due to the metal in the leads. That would be that and I would simply have the scars as battle wounds. That seems pretty straight forward. BUT imagine eating something like scrambled eggs yet feeling like you ate a super-sized McDonald's combo and a large pizza with all the toppings in one sitting. Do I want to risk having that feeling? I have been struggling with eggs recently yet they were all that kept me alive for years. They are so easy to digest when scrambled. Would this struggle get worse? Would I lose more weight? I lost 7 lbs since mid March.I was in the low 80's before the initial implant in 2013.

  Second option is to change the battery. This would allow us to at least set it at the voltage I had just a few months ago. I really hadn't notice a physical feeling of difference since I last saw her. I didn't know it had died. I knew I was starting to really struggle with the easy foods and I started to notice I was becoming less interested in eating. I would force myself, but just the minimum, I really hadn't craved junk food. We all crave sugar or salt at some point. Yet, I couldn't pin point a moment of sudden change. Would I just regret putting in a new battery just to complain about how much I hate the stimulator being there? Oddly enough, even my own pride slipped in wondering what would people think if I made a bad decision. Who was I going to let down?

  Third option is to finally give in to the feeding tube. She explained where it would be placed. It would leave my stomach available for "pleasure eating" but my nutrients would be coming from the feeding tube supplementation. I would have to feed for about 6-8 hours per day. She said most people do it at night so they can sleep through it and go about their day. Because I am a Type I diabetic the feeding may need to be broken up in 2 hour segments spread throughout the day. The positive of this would be a predictable stream of nutrients, including carbs, allowing me to better control my diabetes. With food randomly going through in bits and pieces, as it does now, it is really hard to get the right insulin dosages and timing to match when the small intestine will absorb the carbs that are ingested. This means, currently, I swing from high to low and back quite frequently. Now, hold onto that information. It is important to my final decision.'

  I brought up blood sugar control. I highlighted what I just laid out for you. Of course, she agreed because we have talked in detail about it for years. Then it hit me. "It died back in March or April, right?" I asked. She confirmed. My mind was a reeling movie of the past few months. I remembered having a conversation with my sister in early April about how stressed I was over the entire COVID-19 pandemic situation. I was additionally frustrated at the time because my blood sugars had suddenly gotten even more erratic than usual even though I was being extra diligent. I figured it was stress....but, if...huh? If the stimulator died around that time that meant that my fluctuating numbers could be partly due to the fact that the stimulator had died. Although it was not giving me much relief it must have still been moving food in a somewhat rhythmic pattern I could follow to dose my insulin better. Huh? It could be a possibility.

  That brought us to my final option. We replace the battery and if there is little relief we could put in the feeding tube and I would live with both. Wow. That would probably help a lot. I would love to be 10-20 lbs heavier and that option would get me there. It would also take up more belly space though. It would add additional attachments. Would I be able to cope with that in the long run? Or am I ready to try to cope with it knowing it is necessary? Tough one.  She asked again what my thoughts were. I decided to say, "I think I need to digest this information a bit. Haha no pun intended there. (literally just came out that way) Let me process it and get back to you." She ended that with explaining we could get this done in one to two weeks if I let her know by Friday (this was Tuesday). I told her I would definitely get back to her before then because the weight of the decision would be too much to carry around for very long. I was still taken aback even more when she said one to two weeks. In previous years it had been a few months of prep time.

  As I said earlier, this appointment was two hours away. That gave me time to think, but avoid thinking all at the same time. Again, just hours earlier I had received the great news that I could lose the crutches. I wanted to ride that high. I was enjoying it. The heaviness of this looming decision was allowing it to creep into my thoughts over and over. Getting rid of the stimulator all together would be ideal. I would love to have a little freedom over my own body again. But was it realistic? The feeding tube would help control my blood sugars protecting my eyes, heart and kidneys longer. And it would allow me to avoid force feeding myself. But it is a lot of maintenance. Then it hit me. It wouldn't affect my daily activities much, she had told me, but what about yoga and pilates? I have lived on chair workouts or floor workouts these past four months. I have to exercise. It is not a chore to me but a passion. I am not able to run so would I just have to take long walks for the rest of my life? I'd be walking like Forrest Gump ran. Could I lose another passion? I have already given up so much. These thoughts rolled on and on while I vocalized them as they came. I probably was not even talking in a linear fashion anymore, but my husband listened. 

  About 2/3 of the way home I just said "That's what I have to do..." After a long pause I laid out my logic. I am not ready to give up yoga, pilates, or floor barre workouts. They make my body feel so good releasing my mind and keeping me grounded. It's meditation and prayer. It would be like losing running and basketball. Devastating. That means the feeding tube is out. I am not ready. The battery has been dead about the same amount of time as my blood sugars have decided to go haywire. I cannot afford to lose more vision. I cannot afford to lose my sight. I cannot treat my organs as if they are expendable. I have to make a decision that is beneficial to my health overall. I hate having to wear an insulin pump. It is uncomfortable and highly inconvenient as well as a lot of maintenance. Yet, I do it because I have to control my diabetes. I have to look at my stimulator as if it were a different form of medication/treatment. Just because it is uncomfortable and inconvenient is that a reason to bury my head in the sand and toss it to the curb? No. My blood sugars were better prior to March whether or not my belly felt any different. I have to replace the battery. I decided to sit on that decision and sleep on it. AND PRAY...HARD!

  That's exactly what I did while barely sleeping last night. I woke up and got my son ready for school and my husband set out to work. I started one of my favorite chair cardio videos. This one is challenging and long, perfect for a lot of thinking to be done. Somewhere in the middle it hit me clear as a bell. I can still do chair cardio while recovering. See, I had been worried that any surgery was going to interfere with my foot rehab as well as taking away physical activity for a while. That won't be the case. I can do it all, just balance it. The battery replacement is an out-patient surgery. The first week or two you have to take it very slow, but the recovery time is 3-6 months. That's what I recall from 2017. Physical therapy for my foot was scheduled to start next week. I could still do that rehab while recovering from my surgery because it is my foot and ankle that need light PT for a few weeks before moving up to a more rigorous rehab regimen. Chair cardio places no impact on your feet AND it is not pulling, twisting, or bending your body so my belly can heal. In time I will be able to walk and do yoga and pilates. On top of that, we have a beautiful new elliptical machine gifted to us days before I broke my foot. I will have that option as well. Yay for sanity! "That's the best choice. That's what I need to do." So, as soon as I was done working out I called the doctor's office before I lost my emotional strength. "I want to replace the battery." I told the nurse.

  About two short hours later I get a call from my surgeon's office. The voice sweetly said, "Are you available Tuesday?" Surprised I asked, "This Tuesday?" My face was fully twisted. "Yes. Tuesday the 8th. Let's do the surgery Tuesday the 8th." I knew I had nothing scheduled that day so before I let my mind go too far and my frightened emotions take hold I agreed. She gave me some instructions I am sure I will forget. My mind was spinning. I just kept thinking "What is today? Wednesday? Yeah, Wednesday. Next Tuesday?! Really? Ok." Same thought going and going as she went on. I jotted down a few notes, but told her I assume someone will walk me through this as the week goes on. I quickly called my husband once we hung up. His first words "WHAT? TUESDAY?" then silence. Uh oh. What did I just do? I suddenly panicked. He took a breath, explained he was just caught off guard, but let's do it. He had literally only told his boss minutes before that a possible surgery could be happening this month. We didn't expect 6 days from now. 

  Here is the interesting thing that is so very important to document. We are living in the COVID-19 pandemic of 2020. I have to self isolate for 5 days prior to the surgery. That is no problem. Being high risk I am already self isolating. I also need to get tested for COVID-19 before the surgery. Remember me going into these appointments alone. Well, surgery is no different. Like anyone who is entering a hospital these days, I will be going into this surgery alone. I will fall asleep with only medical professionals surrounding me. I will wake up with only medical professionals surrounding me. You know how I get incredible anxiety in social situations? This will be insane. I will be at my most vulnerable in one of the most terrifying situations in my life. I may sound dramatic, but the struggle is real. This will be an interesting experience to say the least! All I can hold onto is that this will make me a better and stronger person in the end. I may suffer from shyness and anxiety my whole life. Oh well. It will be hard. Oh well. I will come out better because of it; better for my health, better for my family, better for taking care of me. 

  I will walk away from this with better blood sugar control. I will be preserving my sight, heart, and kidneys. I will be a strong example for my son. I will be here longer for my son. I will have faced a fear and overcome it. I can do this. I will still have my exercise to release all the pent up energy I have. I will be able to eat eggs without the feeling of bricks in my belly. There is always a rainbow. I will come out the other side brighter and prettier inside and out. Let's get 'er done!

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