A year full of surprises

   In August 2019 my son and I were taking a nice afternoon walk. I was keeping an eye on my son as he rode his bike in front of me. All of a sudden I fell. Flat on my face. There was no crack in the pavement, no rocks to trip me up, and I did not take a misstep. I just fell. Arms out and everything. I had a few scrapes and bruises, but nothing too bad. I was in a lot of pain, but nothing I could pinpoint other than the scrapes. Cut to September and it became a different story.

   

   After a long night in a hotel room preparing for an eye doctor appointment I woke up with some terrible pain in my right shoulder. Being the product of a football coach and a lifelong athlete, I figured the pain would pass. It didn't. It got to the point that you could not even touch it. I could barely open a car door. It ended up being a labral tear with some bicep tendinitis. I was referred to a physical therapist. After three months I was still in a great deal of pain. At that point I was sent to an orthopedic specialist where I was given a steroid shot. Goodness, that hurt. It did help me get through eight more weeks of therapy. I still needed another eight weeks but this insanity, now known as COVID-19, halted all treatment. 

   Because I had been working so hard I was given an at-home program to follow. I completed eight more weeks at home. I finally reached a goal that was going to allow me to stop therapy. I was given some maintenance exercises to follow thereafter. I was elated. Something that was supposed to be a simple eight week program turned into a nine month attempt to rehab. I am a total Type A so of course I was ridiculously disciplined. I conquered my final goal for shoulder rehab on a Thursday. That Sunday was Mother's Day so we planned a cook-out with my parents. It was exciting. Not so fast. The world played an evil trick on me.

    For those of you who are unfamiliar with COVID, we have been in quarantine since early March. Since I am incredibly high risk I have been stuck at home since March 13. My parents run errands and get groceries when my husband cannot. We were pretty excited to hang out and do something "normal". The world has been in such upheaval. Health and science have been politicized. No one knows much about this novel virus, and new information is rolling in daily, sometimes contradicting the information we thought we already knew. Groceries are hard to come by. People have lost jobs and family members. Frightening stories roll out from all over the world. Churches are not holding in-person services. The school year was completed, by most, at home. The entire world is in survival mode against a predator we have no idea how to fight.

   That Sunday morning I woke up excited for the warm weather and eager to smell the beautiful aroma of a barbecue. My parents were going to show up in about an hour. My son and I were going to run out and get a soda before they came. My husband was in the shower. We just moved into a new home and things are a bit older. I closed the door to a steamy bathroom quickly because I hate steam. Weird, but true. A full length mirror behind the door fell and shattered. When I opened the door to see what the noise was I realized I needed to quickly clean up the glass so my husband could get out of the shower safely. Avoiding the glass, I made my way to the bathroom window. I am too short to open it so I stepped up on the toilet. You know where this is going...as I went to step off my supporting foot slipped. In an attempt to miss falling on glass, I stiffened up and landed awkwardly on my foot. I let out a scream, which is rare because I can take pain really well. Adrenaline was running so I don't remember feeling much. I thought I had just tweaked it. I cleaned up the glass and headed out for my soda.

  My foot hurt, but I have banged myself up pretty bad before so it was no big deal. My son kept asking if I was ok. I brushed it off saying "I'm fine. Just a stinger." When we got home I realized it was more than a stinger. It was hard to walk up the driveway to our front door. I did not want to take off my shoe because I did not want to see what was wrong. I also didn't want it to swell. I figured I'd deal with it after the cook-out. A little ice, some elevation, and I'd be good. WRONG. My dad had me take off my shoe so we could ice it. I quickly realized I could not even put weight on it. Being in the middle of the COVID-19 pandemic there was no way I was going to go to the ER.

   The next morning I got ahold of my doctor. He sent me for X-rays and referred me to a podiatrist. I was so frustrated because I had just finished up with my shoulder. Now I was going to have to heal another injury? Yup. Turns out I broke two bones. Calcaneus and cuboid. That is the heal bone and the stabilizing bone that connects it to the rest of your foot. Due to the fact that I have a gastric stimulator I am not able to have MRI's. In this type of injury it is important to get an MRI to evaluate soft tissue around the bones. The next best option is an ultrasound. Welcome to rural New Mexico. I was referred to a hospital a few hours away for said ultrasound as they are different than an ultrasound you would get during pregnancy. With a scheduled appointment confirmed a few times with specifics, we made the scary trek to another city that had a lot of COVID cases. Remember, I had been totally isolated for months. Now all of a sudden I was in and out of doctors' offices and hospitals, and a different city. I got to the hospital and checked in. In all of these settings only the patient is allowed. Due to the high number of cases of this highly contagious virus, no one is allowed to accompany you. After waiting a little while I was informed that they did not have the correct ultrasound machine. Apparently the frequency necessary is different than that of a typical ultrasound. The determination was that I needed to go to another state to get this ultrasound.

   I returned to my local doctor. We discussed options and decided to hold off on the ultrasound. I was just going to stay in a boot and not put any weight on it. I had already been doing this for about four weeks while trying to get all the imagining done. I was scheduled for a follow-up four weeks later in the hopes that I could move up to a walking boot.  Hopefully the walking boot would last about six- eight weeks then I could move on to physical therapy.

  In a strange twist, the physical therapy facility I had been going to for my shoulder called. They were now going to be allowed to bring patients back in. They wanted me to schedule an appointment. I explained I had done what was planned out for me, but they still wanted me to come in. I made the appointment letting them know I had injured my foot and could not put weight on it. Although it added some challenges, they determined I still need to work on my shoulder so they got creative with treatment and started me back up.  Oh goodness, I must stay positive! Surely I am near the end of total shoulder rehab. I took on the challenge.

   Here I am, a week away from seeing the podiatrist for my follow-up and I am still in a great deal of pain. I am back to cringing every time I move. I know I take longer to heal with all I have going on. I also know I eat well and continue to find creative ways to exercise without bearing weight. Why then, is it still so painful? My research brain finally took over. I started looking things up only to get discouraged reading about healing in four- six weeks plus physical therapy. I decided to get my head out of the sand and look into diabetes and bone healing. Due to bad circulation that comes along with diabetes, the feet are a big concern. Nerves and tissue get damaged easily and it can quickly go bad. I had never paid attention to bone issues though.

   I pride myself on my knowledge. I call myself an information junky or professional student. I like to understand what is going on so I can play an active role; not just in my health, but in life. I often try to stay away from internet health research. It is like the bible in that anyone can find anything that suits their ideas/ fears/ opinions. I do not want to play doctor. I also did not want to call the doctor a week early, eventhough he said to call if anything came up. I just want to avoid more visits, especially since I am now back in organized physical therapy. My main fear is that he will want the ultrasound to look at the soft tissue if it is continuing to hurt so badly after seven weeks. Not only do I not want more appointments, but I do not want to travel. The pandemic of 2020 is no joke, especially for the high risk. Rather than call the doctor, I turned to the internet for validation. 

   Turns out it can take 87% longer for a broken bone to heal in a diabetic. On top of that, there is a 3.4 times higher risk of complications such as infection, dislocation, delayed union, nonunion, malunion, and more. What?! I looked high and low for something more positive, but this is what I kept coming across. Article after article, study after study. If there were no actual numbers, the information was the same. I am not sure how I feel about this. On one hand, I am glad to know it is normal for my body not to react like a generally healthy person (as if I thought I was Wolverine and could heal no matter what), but on the other hand the timeline seems so daunting. I have been and, a little moreso now, am worried about soft tissue damage and what treatment may look like beyond just healing the bone.

   What do I take away from this? Take a step back. Rest. Rest as much as possible. Be patient. I will have a bone density scan on Monday and will see the podiatrist Tuesday. He will give me the information I need. If it is necessary to travel for some additional imagining, so be it. Maybe it will be a nice change of scenery. Hopefully it will be fairly close. Remember that if there is ever a time to be laid up, it might as well be during a stay-at-home order due to the COVID-19 pandemic. Eat as well as possible. Drink water. Monitor my blood sugar closely to keep it as controlled as possible. Better control leads to better healing. And finally, take note. What have I learned in the past ten months being injured? Blessings. I have always had a positive attitude, but these things make you take inventory.

   This pandemic has left people lonely, sad, scared, out of work, financially strapped, and so much worse. My shoulder injury happened in August, but the pandemic truly began in January, then my foot in May. It is tough being chronically ill. I like to think I handle it well, but I do struggle just as anyone else would. This has made me want to be, what I refer to as, "Lauren sick" not "Lauren sick and injured". I actually miss just being sick. Maybe that wasn't so bad, eh? I am lucky to have my son and husband. We are lucky my husband has a job in an essential field like pharmacy. We have a home, clothes, food, and the most fantastic little nine month old rescue dog. We have luxuries like internet, TV, computers, cell phones, air conditioning, and running water. We live in NM with some of the most beautiful scenery. We have sunshine more days than not. Pandemic or not. Injured or not. I am so blessed to live this gift of life. I am so blessed to have a body, although sick and banged up, that allows me to move everyday. I have learned some pretty cool new exercises along the way that are actually really fun. Sometimes you have to embrace that kid in you and just let it all out. Chair jumping jacks are pretty darn fun. And chair boxing, come on now? So fun. Have you tried a "hurt foot workout party"? 

  Truth be told, I have been having a pity party these last three days. Researching, digesting, writing, and laughing have helped me get to this point. Life ain't all that bad. We go through some tough stuff sometimes. You cannot grow a beautiful garden in beautiful beach sand. Sometimes you have to cultivate the dirt, through some crap in, plant some seeds, and nurture it to see the true beauty that emerges. This pandemic, these diseases, these injuries have all made me who I am today. And today folks, I am one resilient, strong, smart, faithful, and proud fighter. Take that.

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

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

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

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

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

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

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

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

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

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

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

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