The Battle We Fight Together

   This week has been a bit tough. I tend to stay on the positive side, but I am a multi-layered person. The confusion, unknown, and emotional roller coaster of COVID-19 is overwhelming me more and more as people continue to divide and shame one another. More people are rebelling against recommendations for safety, sometimes using politics as a guise. The truth is, we are all grieving.

   We are grieving the things we were used to having daily. We are grieving the freedom we had. When I say freedom I am not talking politically or liberties; I am talking about freedom from this pandemic. It is the pandemic that has taken away our freedom to run to the store for something trivial. It has taken away jobs and our freedom to quickly find financial resources/assistance. It has taken away the luxury of having fully stocked shelves with an abundance of non-essential items. We miss the salons. We miss the parks. We miss the gatherings. We miss knowing what tomorrow will bring. And everyone grieves differently.

   You hear about the five stages of grief. When we think of grief, we typically think of death. That is not the only source of grief in our lives. Some grief we can overcome, but some is cyclical. The death of a parent never gets easier, it just becomes more distant when the tears run out. The loss of a close friend by moving far away is something we tend to learn to deal with and get past. That often comes by creative ways of staying in touch or finding another outlet. The grief of losing the championship in your favorite sport will fade. Losing so much to illness causes great grief. This grief tends to be cyclical. I can only speak for myself, but after becoming so sick it became a disability I deal with grief daily.

   I had dealt with Hashimoto's disease since I was in 8th grade. I dealt with IC for several years. And I had learned to deal with Type I diabetes fairly well. They all frustrated me and caused grief, but I could cope with it. I was still able to be in school. I was still able to work. I was still able to eat regular food. I was still able to run and swim and play basketball. I was still able to be an over-achiever and proud of it. I thought I was just tired. I thought I was just stretching myself too thin. I brushed it all off thinking it was going to pass. I was wrong.

   When I turned 25 I was living the life I had planned out. I was achieving the goals I had set for myself and finding new ones along the way. I am not good at sitting still. Then the wall came tumbling down the day I went to the doctor to express my exhaustion. Maybe my medication dosage needed to be changed. It had to be something simple. As I was talking to the doctor she stopped me and said, "I thought you were coming in to get disability paperwork filled out. I would normally tell people no on first request, especially without knowing the patient. You, my dear, need to go on disability." I am sure my face twisted.

   I pushed back a little. I have always seen doctors as people of authority. I am not the type to resist authority. So I meekly asked her a million questions trying to understand why. It didn't matter. It had shocked and scared me enough. She said to quit school immediately. I was only a few weeks from my bachelor's so I said surely I could finish out the next few weeks. She said no. She worked in the same clinic building I did. She said I needed to take short term disability from work starting immediately. I know the whole time my face must have expressed shock and confusion. Then she began ordering tests and explaining in more detail her concerns.

   I left her office holding myself together. I think shock was keeping me numb. I reported to my boss. That was my last day of work. I went home and emailed my professors. It was too late to withdrawal so I simply had to ride out the next few weeks with the grades I had already gotten through previous assignments. There were three classes I was not able to complete to obtain my degree. I was devastated. I still believed I would return to work in a few months and maybe finish out school. I just assumed I needed to get stabilized. I had no idea it was going to grow to the spider web it has become.

   Months went on, test continued, and things got illuminated. I was sent to one specialist after another. I was rushed off to the Mayo Clinic. I was forced to go on permanent disability. More diagnoses rolled in, one after another. Then there was the trial and error phases of stabiliaing each condition. Within a few short months I had gone from a full-time working mother in college full-time to staying at home or living in doctors' offices. My diet was changed completely. My nightstand started to get filled with more prescription bottles. My freedom was slowly drifting away. Long gone were the days of spontaneity. Long gone were the days of competitive running. Long gone were the days of eating at a restaurant liberally. Long gone was everything I knew. The rug was ripped out from underneath me with no warning.

  There were days of sadness. There were days of anger. There were days of confusion. There were days that were kind of OK. And there were days with these all combined. I became creative with my food so I wouldn't feel so deprived or separated from the norm. I bought yoga videos and starting taking long walks to replace the sports I was no longer able to enjoy. I surrounded myself with good friends and family that didn't see the sick, they saw Lauren. I prayed. I kept myself going, and still do, knowing that this pain will not be in vain. I will see the beauty of this mess eventually, I thought. No one around me really understood what I was going through and I had no idea how to express it. I also did not know what to do to reclaim myself. How do I find Lauren in this new normal? Will I ever be happy with it? 12 years later I can tell you it gets easier, but it is definitely cyclical.

   It wasn't until I saw a therapist that I realized all these emotions were part of grief. I didn't think grief came from becoming ill. When she explained to me that I was mourning the life I was had, it all made sense. The Lauren that I once knew was gone. I needed to discover a new Lauren to help mourn what was now gone. Then I started analyzing everything. I was a double major in psychology and nursing so it made sense. As it became more clear I became more comfortable with the idea of grief. The thing is, I thought I would overcome it.

   The reality is, everyday there is something new. When you lose a loved one or a tangible item it is final. When you lose freedoms it can be endless. As my diseases progress things get tougher. More limitations are brought on by simply progressing. My two most recent injuries are perfect examples. I know that I have accepted my diseases. They do not define me, they are just simply there. Ok. Got it. What I didn't realize is that I am not accepting the less common complications and progression. Somewhere in my mind I think I assumed because I am so diligent and disciplined none of that would come up. I thought I was above all that. I now see how delusional that was/is. I am now facing some real problems I thought only happened to other people.

  This is much like the current crisis we are in globally and nationally. This illness that we do not understand has snuck in and taken over every aspect of our lives. It is affecting us as a whole yet individually at the same time in different ways. We have lost the freedom to simply run to the corner store for only milk or a soda. We have lost the security of knowing what we need will be at the store. We have lost jobs and opportunities. We have lost in-person contact, hugs, handshakes, etc. We cannot just go to the movies or a sit down restaurant. We have lost faith in our leaders. Yet we have nothing tangible we can fight, but one another. We need something to yell at, point a finger towards, blame. It is just this faceless, invisible, misunderstood virus with no emotions or thoughts or prejudices. Nothing we do will change its nature. We feel hopeless.

   The truth is, there is something to fight. It is not the person wearing the mask. It is not the politician who speaks as if they know this illness like they know the enemies we fight in war. It is not the doctor or scientist explaining their findings to us. And it is not the people who are trying to keep us safe by setting guidelines. What we need to fight is the virus. COVID-19. It has a name. Its face is that of those it has infected. There is power in numbers. No single man has ever fought a war and won on his own. He has a team, a military, a weapon. Our weapon, for the current moment, is simple hygiene and wearing protective gear like masks. Soon our weapon will hopefully be a vaccine and better treatment options. We have to go through this methodically and not rush anything. If there is anything we all know, it is that rushing leads to mistakes/oversights and set backs. 

   I believe. I have hope. I have faith. We will get to the other side of this. I know for sure we will be facing a "new normal". We have to find creative ways to fill the voids we feel in our lives. We have to do it together though. It is a must. We cannot battle one another. We must focus our battle solely on the virus. We are all multi-layered people living in a nuanced world so we are going to be dealing with other issues beside and combined with COVID-19. But we must remember, the fight is with COVID-19, not with one another. I send out love, hugs, and prayers to all. I send out faith. 

   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.