Welcome To A New World

   Well, it is officially December. 2020. This means it is a holiday season wrapped in pandemic struggles. I just think it is important for all of us to refocus our energy. We are all struggling, some more than others. Whether it be financial, emotional, physical, etc. it is causing us all pain. We are smack dab in the middle of the craziest (and probably most historical) election of all time. Everyone is divided on a number of issues causing a lot of relationships strain. We are all used to getting together with family for Thanksgiving, Christmas, Hanukkah, and other holiday gatherings. This year that is not a safe decision. So what do we do when we feel helpless, hopeless, and lonely?

  First, start by taking away the labels. Yes, celebrate! Decorate, cook, buy gifts (online or by phone), donate. Whatever it is that brings you joy, do it. The difference is, it is not a safe choice to gather. One thing I told my mom years ago when she found out we would not be together on Christmas Day was, "The name of the day means nothing. We can get together and celebrate anytime." We ended up having Christmas at their house a few days early so we could be with the other grandparents on Christmas Day. We have approached all holidays this way. Now, I understand it is more difficult than just moving the celebration plus or minus a day this year. But why not enjoy the holiday remotely. Then, in a few months (have faith) you can gather in person for Christmas in July or something of the like. The label on the day does not make it law that it is the only day to celebrate that occasion. And why wouldn't it be fun to celebrate more than once, remotely then in person? I'd take any extra joy this year...or in 2021.

  Second, think of the dangers. In my health battles I have come to hear and use the phrase "Risk vs. benefits". Is it safe to get together right now? No. Yes, we can take COVID tests prior to gathering. That then requires quarantining. Self isolation still leaves you with minimal exposure. I, personally, would never forgive myself if I inadvertently got one of my relatives sick. It would be even worse if they lost their lives due to getting together for one holiday meal or party. It is tough not seeing one another during this time, but it would be devastating to never see one another again. Wearing a mask is easier than a ventilator. Washing your hands is easier than having long term damage from this insane virus. Being apart for some time is so much better than being apart forever due to someone's death. Believe me, I understand the natural yearning to be together, especially during the holidays.  For some, this is the only time they see their family. For others, the grief and trauma from the past year leaves you needing a big hug from the one who always makes you feel safe. It is so hard to resist the urge. But stay positive and remember this too shall pass and we can be together soon.

  Third, think of the good things you do have right now. For starters, you have life. That is a special gift we receive everyday. Obviously you have sight because you are reading this right now. So add to the list, literacy. You must have a computer or smart phone to be able to access the internet. And those are just the obvious from a person who is typing and does not know your whole story. But what else? There must be a few things. My life with multiple chronic illnesses is wreaked with loss. Everyday I am grieving the person I once knew as myself. Everyday I am grieving something new I may have lost. For example, my diet is constantly becoming more and more restrictive. This leads to weight loss, energy loss, lack of nutrition which causes other complications, and the general ability to have freedom with food options. So lately, I am grieving my sight. It is becoming more and more difficult to see. This has been going on for some time now so I should be accepting of the idea yet because it is slowly getting worse, I am slowly grieving each loss; color, detail, distance, depth perception, peripheral vision. I love sports. Try following a football on TV being thrown 30 yards. It saddens me. But the good thing is, I still have sight. Let's take clothes for another example. I am struggling with clothes because my belly is not happy having anything touch it. I am self conscious because I don't get to wear "pretty", "womanly" clothing. But flip that to the positive side and I see at least I have clothes. I also have a good reason to dress comfortably everyday. It is a good excuse for sweats and t-shirts. So, what things do you have that are special? Hold those close to your heart.

 Finally I have two things to point out. Recognize why you are celebrating. It should be focused on the holiday. What is the meaning behind it? All the family gatherings and parties are just a bonus. But what is the true meaning? Focus in on that. Diverting your thoughts to focus in on one intention does wonders for the human psyche. It can help quiet all the noise of those reeling thoughts that may be overwhelming you. Also, find some way you can help others. We do not have to be face to face to help one another. It can be a sweet card left at a neighbors' door or donating even $0.50 to a small business or non-profit organization. Donate food to your local food bank. If you can offer to help the food banks package or serve the needy. Send anonymous cards or small gifts to friends, family, nursing homes, where ever. Doing things for others helps take your mind off of your own struggles. It can open your eyes to the gifts you have. It will make you feel good to put a smile on someone else's face. You know, smiles are contagious. You will also be, most likely, working with someone else (socially distanced I hope), and the interaction will be uplifting. I spent every Wednesday at a homeless shelter serving food just after I got my gastric stimulator because I was so traumatized and overwhelmed that I needed an escape. I needed my thoughts to be on anything but my failing health. And you know what? It worked. It may have exhausted me thereafter each time, but the few hours I was there it was like I was my old self again, cleaning tables, serving, cooking, full of energy. Seeing the children was the most heart-breaking and heart warming. Their smiles are burned in my mind. They would be so happy and grateful for something as tiny as a Hot Wheels car or an extra candy cane for dessert. It really put things into perspective for me.

  I know some of these things sound cliché. And they are. But when you manipulate them to fit your current life and your talents or expertise they really can make a difference. I haven't learned a new language or learned how to cook fancy things. I haven't found a new craft or found a great new business idea. I am not rising above daily. I am not flourishing while others dwindle. I may sound self-righteous or all knowing, but I guarantee you I am not. These are things I tell myself daily to make myself feel better. I have to actively work on these things to keep it all at the forefront of my mind. I am still really struggling with depression and anxiety right now. It is a low swing for me. I just know that if I do not actively try to refocus then I will spiral and that is not what I desire whatsoever. 

  My son knows my struggles, but I want to show him you can trudge through the mud to get to the beauty. I want him to see that even adults struggle and that makes us human. But the struggle is making you stronger. To make a sports reference, when you are working your muscles hard they begin to shake. That shake is the struggle. But that shake is also a sign that the muscle is getting stronger. The next time you attempt that activity (after some rest) you will be a little bit better at it. As time goes on, when your body does that activity it becomes easier and easier. Same thing goes for emotional struggles. The struggle is actively working on these positive steps. The shakiness is that struggle. Once you come out the other side, you are stronger and ready to face that struggle next time. (Challenge: Do 10 push-ups everyday for 5 days. Take a rest day. Then do 20 for 5 days. Take a rest day. As you move along, within a month you can do 50 strong push-ups. You'll look back on that strength progression and be proud.)

  My point is, this is not all bad. Pandemic and insane election/politics is definitely a recipe for destruction. With destruction comes reconstruction. Look for the silver lining. There is always a silver lining. My health has proven to me time and time again that there is good in everything. I know way more about nutrition than I ever thought I would. That helps me keep my whole family healthier. I am a master at ratio: proportion math in my head due to medication dosing. I can plan like nobody's business. Packing food and medications and medical devices for any outing makes you really good at being efficient yet effective. My mental health leads me on journeys for new coping skills all the time. Breaking my foot caused me to learn new exercises which lead me to improve strength in parts of my body I really needed. It also opened my eyes to new things I would enjoy doing to stay active. I lost my dad when I was very young. But he loved me and taught me so much in the few years we had together. His energy/soul is always with me because he was a fighter. He lived his life to the fullest, often with no regret. With my tightly wound personality, that spirit is much needed at times. In that loss I gained another dad. One that loves me just as much. He did not replace my dad, I just got lucky enough to have two. Bonus, he came with a whole new family, including siblings, that loves me just the same. I could go on and on about my personal struggles and what silver linings I found, but I will not bore you with more of me. There are rainbows everywhere.

  What I want you to know is that I see you. I hear you. You matter to this world. There is a reason you are here. Do not dwell too long on the pain. Pain is not forever. I promise. I am no higher power. I am no expert. I am nothing special. But I am a woman on a mission to educate, enlighten, and encourage anyone I can because it is important you know you are not alone. I have felt alone many times in my life and it would send me looking for guidance or a road map. I often never found one. That hurt more than anything. You don't have to listen to me. You don't have to like me. But I don't care. I want to help make your life better. I want to help make this world a better world for those to come. You can do hard things. You made it this far. Please, keep moving one baby step at a time. And please think of your fellow man. Be thoughtful and careful. Be kind and generous. Call it karma, call it whatever you want, but your efforts will come back around to you. I know it.

The Struggle Is Real

  Fear escapes no one. I have been struggling the past few weeks from a stigmatized condition I rarely open up about. When I was younger I was diagnosed with both social and generalized anxiety. At times it can be debilitating. With that comes depression due to conflicted inner feelings. Intellectually I know what I am facing is a little scary but my body reacts with utter fear and irrational thoughts. That is part of the battle. Then it turns into a personal comparison with others around me who do not struggle with anxiety. I may see them uncomfortable in the same situation, but not to the severity of my own uncomfortableness. Why does my body not react that way? I wonder.  I know trying to force the anxiety won't work so I often just let it runs its course. Lately it is being compounded by depression. I believe this is partly due to the current pandemic and civil unrest in our country. A lot of it is stemming from my health as well.

  If you've followed my blog you know I have a complicated web of illnesses that continuously battle one another while continue to progress themselves. A year ago I injured my right shoulder and spent 9 challenging months in rehabbing before I had to abruptly stop due to the pandemic. With that I continued a program at home they laid out for me. I reached my final goal about 2 months later. Within days I broke my foot in two places. What should have taken 6-8 weeks to heal wound up taking a little over 5 months. All but the last 4 weeks I had to be non-weight baring. For an active person, that is torture. Endurance was the name of the game. But that was not all that I was dealing with throughout this time.

  In early September it was discovered that my gastric stimulator battery had died and needed to be replaced. Within 6 days I underwent the surgery. Prior to the surgery my blood sugars were so erratic it was driving me crazy just making it through the day. My lack of treatment from the gastric stimulator added to the lack of activity from a broken foot was the perfect storm for uncontrollable numbers. When the battery was replaced I noticed a slight improvement, but not a lot. I did have the stimulator turned up a bit, but the reality is my gastroparesis is far more severe than a lot of others who have a stimulator. Their batteries may last 5-10 years whereas mine has gone from 3 years, down to 2, and now it is estimated to be 18 months. Not only is that overwhelming, but it was a choice between this and a feeding tube. That decision will be revisited next time the battery dies in a year or so. Although I know I made the right decision this year, the decision for next time is looming. I try to focus on the present, but that thought is hard to push away. And yet my struggles did not stop there.

  Due to some discouraging news that I had osteoporosis discovered after m foot was broken, my endocrinologist worked with my gynocologist and primary care doctor to figure out an appropriate treatment for a young 37 year old woman. They decided on an infusion )administered by IV) I will receive yearly. They warned me of "flu like symptoms" in the days that followed, but what they should have said was "incredible pain from deep within accompanied by vomiting and diarrhea". I felt so horrible I thought I would die. I am good with pain and face things head on so you know this was rough. Thank goodness it is once a year and now I know what to expect. But this was actually tough emotionally because of my age. Not only am I frightened by breaking another bone, but I am being treated for osteoporosis in my 30's. My immune system is being beaten down.

  The second day of feeling so horrible I get an email from my gastroenterologist. She said I had active antibodies in my blood work. We are doing everything right so my antibody count should be down. She decided I need to have an endoscopy and some biopsies. This means I will be put to sleep to have a camera go down my throat to my stomach to take pictures and obtain tissue samples. I lost it. I was healing from a broken foot, surgery, and an aggressive treatment then I get an email detailing more concerns. Plus, who wants to fast only to be put to sleep and have something shoved down your throat? I wake up feeling awful. My throat tends to hurt for a few days. And I also tend to not handle food well for a few days following. In addition to that, what will she find? I rarely end up hearing "You're all good!" They have also warned of stomach cancer due to my digestive damage. I am actively trying to avoid those thoughts, but I don't want to be put under AGAIN.

  I am now rehabbing my foot. I am incredibly grateful for making it this far. My shoulder is good. It will never be perfect, but it's doing great. Big plus. Umfortunately the mental strain of the two is definitely lingering. Although I am glad to have a new stimulator battery I know what the reality is and I don't really like the view. I am now constantly afraid of falling or breaking a bone because treatments are not cure-alls. And now my immune system is kicking up unnecessary antibodies causing me to undergo more tests. I'm scared. I am strong. I am a positive person willing to be fulling active in my healthcare. I am hardworking. BUT I am scared. I have rarely asked myself, or God, "why me?", but lately it is creeping in more than I'd like to admit. I know God has a plan and I am impatient to see the end game.

  There it is. We are going through some incredibly unprecedented times. Relationships are being destroyed or damaged left and right throughout our country and the world. My poor only son has not been around his peers in months. He is doing hybrid learning, but he may not even be doing that soon. I am getting too concerned with COVID numbers rising and my health challenging me at every turn. Humans were not made to live this way and we have had no opportunity to adapt so our reaction of chaos and panic seems natural. My health and fears of what is to come are overwhelming. My body is exhausted but I push through because more needs to be done. I feel like a pinball bouncing from barrier to barrier but not getting anywhere. I am stressed, depressed, and my anxiety is through the roof. 

  No medication will help. I do not like taking meds anyway so I often refuse them if it is not life sustaining. The particular medications to help treat anxiety and depression cannot be used in a patient with my digestive disease because it is not absorb or metabolized properly. I do exercise daily. That boosts all the endorphines.

What Can I Say?

   I have had a case of writer's block. Possibly writer's fear or anxiety. The world is so chaotic, I am a ball of anxiety and fear. Fear of the unknown. Fear of losing friends and loved ones, whether to the pandemic or differing feelings about the current state of our world. Not only are we in the eighth or ninth month of social distancing, lockdowns, and restrictions, but we are also in the midst of the most important election in a lifetime. In addition, there is social unrest due to racial disparities and injustices. Ultimately, I just have had no real, logical words to express myself. Had I attempted to write before now all that would be said would certainly be nonsensical, emotionally driven statements. I do not need to force my ideas on others and I am too sensitive for someone else to force their ideas on me. I finally decided I was rational enough to sit down and document where everything stands in my world today.

  Today is election day. Today we get to decide who our president will be for the next four years. Due to the pandemic, I voted by mail weeks ago. That took some weight off of my shoulders. As the day has gotten closer and closer, people have gotten less civil and more emotional. There is anger, fear, anxiety, righteousness, you name it. The tension has become so great there have been security measures set in place for riots and other violence prevention. We have a president who does not want to accept a loss and has said there will not be a peaceful transfer of power if he loses. We have a candidate who was once the vice president, and whose running mate is a mixed-race woman. Powerful things have been said on both sides. The outcome of the election is likely not going to be heard today. The country is in a serious state of unrest. I, for one, cannot wait for it all to be over with, no matter the outcome. Stop the insanity and bring back civility. That is all I have to say regarding our government.

  As far as I go, things are running as usual. One thing slows down and another thing arises. One of the best things that has happened recently is that I got a new insulin pump. Technology is always progressing making better and better tools for treating diabetes. This particular pump communicates with my continuous glucose monitor. It is called a closed loop system meaning it alerts me when my blood sugar goes high or low. If it starts to trend low, the pump can suspend insulin delivery for a short time to allow me to get fast acting sugar to correct it. This helps prevent severe lows and allows you to be a bit more active without having to prepare so much. Often before activity a diabetic will lower the amount of insulin they receive to prevent a low blood sugar. This pump helps. It also can predict a high blood sugar coming and adjust it by increasing insulin. For someone with gastroparesis, that is critical.

  Of course, I still have to monitor and manage my diabetes. This newer pump just adds that extra layer of protection. I have mentioned before how difficult managing diabetes is with gastroparesis. The food does not travel predictably through the digestive tract making it hard to fine tune insulin dosages. I often drop low too quickly and end up in the severe low blood sugar range. That is equally true of my high blood sugars. Part of the problem with that is the possibility of stacking insulin making it more likely, and more dangerous, that I will end up with a severe low. A common problem is a rebound effect. Your body recognizes your blood sugar is low, but it recognizes it too late, usually after you have taken some form of fast acting sugar. In turn, a few hours later your blood sugar sky rockets because it has corrected itself much later and you already treated with juice. Then a correction or extra dose of insulin is needed to bring it down to normal and often times that roller coaster continues. This new pump will not prevent highs or lows, but it will help reduce the occurrence of these roller coasters. Not only are they damaging, but they feel horrible too so it's a major score for me. (side note: inulin is not cheap and the government has not done anything to change that. Diabetics are supporting each other to help us all afford what we can get) But I can never forget that Type I diabetes is my only challenge.

  A few months ago I opened up about being diagnosed with osteoporosis at the young age of 37.  After a few months of doctors consulting and brainstorming they finally decided on a treatment to prevent the risk of more serious broken bones. It is an infusion called Reclast. It is given once per year so it seems easy enough. Well, yes and no. I went for my first infusion last week. It took almost two hours. I was in the infusion center alone because COVID is still spreading so there can be no additional people in the facilities. They warned me it may cause flu-like symptoms for a couple of days. What they should have said was, "You may feel like you are dying, but it only lasts a few days." The next day I woke up with a fever and every inch of my body hurt. I have a high pain tolerance and this HURT everywhere. I was vomiting and more. It was awful. Luckily it did only last about two to three days and luckily this will only be once a year. Now I will know what to expect. But wait, there's more.

  The evening I felt the worst I received an email from my gastroenterologist that said I had some antibodies in my blood work and she would like to do an endoscopy and some biopsies. Most of the antibodies are related to Celiac disease. I am very strict on my diet so there should be no active antibodies. At this point I have no plan. I want to hear from her exactly what the plan is and what she is looking for in particular. I also asked her to give me the worst case scenario and the plan that would follow. I have not heard back as of yet. My issue is simple. I am tired. 

  I spent almost a year in physical therapy for a labral tear in my right shoulder. Then I broke my foot four days later. I spent five plus months laid up. The last month of that I had surgery to replace my stimulator battery. I am in physical therapy now for my foot. It has been about five weeks. And last week I had one of the most difficult treatments with that infusion. I am not so sure I want to be put to sleep again, have biopsies done, wake up with a sore throat, and feel crummy for a few days. Honestly, I don't want more bad news. I am overwhelmed. I normally would face this head on and go for it, but not this time. I am just exhausted emotionally and physically. My thoughts are to wait for more answers before I agree to anything. And in the meantime I am going to spend some time with my son.

  So without further ado, I am signing off. My plan for the day is to watch Disney movies and avoid all news and commercials. We will sing, and laugh, and all that good stuff. As tough as it may seem to believe right now, God is here. He is asking me to be still and listen. That's what I intend to do. I pray that all of you are well. And go exercise your right to vote. The sun is shining, even through the clouds. Never forget that, especially on the hardest days!!

Self-compassion Is The Goal

   My goodness. I barely know where to start. The world is in chaos. I can openly admit I am exhausted. I am an extremely high risk person living in this pandemic. We are all experiencing COVID-19 fatigue, meaning we are so tired of it we are becoming a bit more reckless. This is understandable! Many are using the excuse that we cannot live in fear. The thing is, I am not living in fear. I am living in caution. I personally am not scared of dogs; however I would not walk into a group of dogs I am unfamiliar with because that would put me in danger of getting attacked. I do not live in fear, but I do protect myself from danger. This means as long as people are treating this virus as if it were as simple as the common cold, I cannot leave my house. I can wear a mask and wash my hands, but if those around me are not it takes away that crucial layer of protection for all who are high risk. I do go to the doctor or hospital if necessary, but those environments are the safest during this time. Even the physical therapy facility is taking serious protocols and following all CDC guidelines. I just would enjoy being able to rejoin the world beyond maintaining personal health.

  That being said, I did go to the doctor twice this week. I will start with the fun part. I had a follow-up with my podiatrist Tuesday. I have been doing physical therapy since September 15th, but I have still been in a boot. I really only worked on range of motion. At Tuesday's appointment I was cleared to graduate out of the boot. Funny thing is I had bought new shoes just days before I broke my foot. After five plus months in a boot and using crutches, most of my right foot shoes are really worn down. It was really helpful to have new shoes waiting for me in the box. I have to wear special orthotics. I will continue physical therapy to regain strength and range of motion. I am fine with that. 

  I am ecstatic to have the ability to sleep and walk without the boot. My foot does get tired easily. We take for granted all the work our feet do. There are muscles in places I never imagined. Again, I don't mind. I know with some work it will get easier. It is funny to watch it not move when I am concentrating so hard trying to move a muscle. If you know me, you know I like a challenge. I like to tackle and conquer challenges. That makes the rehab process for my foot rewarding. My physical therapist told me, "I'm so glad you are OCD. You are really trying to make sure you get it done right." It was part taunting and part complimenting. He is not the first to mention how rigid I can get so I took it with a laugh. He said many people go through the motions without making that mind to muscle connection so they end up hurt again. I cannot promise I will not hurt myself, but I can promise I will work to prevent it at all costs. That sort of connects to my earlier thoughts on COVID. Do not live in fear, but do what you can to prevent the worst. That baby step forward of graduating out of my boot was not the only excitement for the day.

  I was able to make it home for a quick lunch and some stretching exercises. Then my husband and I headed north to my general surgeon's office for a surgery follow-up for my gastric stimulator. She is about two hours away so it is a good time to blast some old music and enjoy the ride. This appointment was not nearly as eventful, but still productive. I am healing very nicely. I have not lost weight. She simply bumped up the voltage and cycles. This will make my stomach move just a little more. To put it into perspective, I was at a ten for voltage for the past 4 years. When she replaced the battery she had to start slow and low, at a six, to allow my body to adjust again. Now, I am at a seven but with a higher cycling time as well. The next best thing is that her office is near nutrition I love.

  Whenever we go out of town food is the main excitement. It sounds ironic because food is such an enemy to me. Her office is near a Smoothie King. Smoothie King is a smoothie joint that was started by a gentleman whose brother had similar digestive issues. He wanted his brother to have a place to go so he came up with this amazing business. They have smoothies of all sorts, but more importantly they make dairy-free, gluten-free smoothies. They also generally have snack food. We first came across this place in Dallas/Ft. Worth, but was surprised to find it had expanded to New Mexico. Then there is a burger joint my husband loves so he got his treat too. We drove home with the sun setting on the beautiful scenery of northern New Mexico. Since we drove south we enjoyed the sunset.

  All in all, things are looking up. I enjoy periods of time when I am showing improvement as opposed to frequent tough news. I will ride this high for a while. No one can take that away from me. I hold these feelings close to my heart. I still have the reality of being chronically ill. But I am a fighter.

  Let me tell you a little about me beyond "the sick". I enjoy most genres of music. Music is in my blood. Radio has been a huge part of my life thanks to my family working in radio for years. My grandparents met while my grandma was making money singing on radio commercials. My parents met while my dad was a DJ at my grandfather's station. I enjoy being active. Again, it runs in my blood. My dad loved surfing. My mom is a marathon runner. And my step-dad (hate that word) was a football player and coach. I have played and participated in sports all of my life. I love to read. I am that oddball that loves non-fiction, but I can soak up a fiction novel often as well. I really enjoy science, especially nature and human anatomy/physiology. I am known to break out in random acts of dance. I am a very faithful person. The Lord is my savior. I drive a truck because that's just who I am. I enjoy volunteering when I can, although in the past couple years I have not been able to maintain anything on a regular basis. In turn, I frequently find things to donate in any way I can. I mentioned earlier I like a challenge. I love the feeling of accomplishment thereafter. I am also stubborn. I can get passionate and the stubborn seeps in possibly causing a mushroom cloud. That's kind of a joke, but not really. I am very honest with my feelings. I could go on and on, but I will spare you.

  I just thought it was important to take notice of the fact that underneath all of this unbelievable medical issues is a bright human being. We all face challenges. We have all been given a hard deck of cards. The good thing is we have all been blessed as well. That is the joy of life. The up's and down's and what you learn throughout. It makes the high's even better. We are also all multi-layered creatures. We have gifts to offer. Celebrate your gifts. Highlight your blessings. Appreciate the challenges that teach you such valuable lessons. Be self compassionate. Focus on the good and the good gets better.

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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