Appreciate The Victories

  I wanted to write last week, but was honestly just too exhausted emotionally to get anything out there. I know I am not alone. Again, I am a positive person. I just do not think anyone is getting through this year unscathed. In an effort to avoid further conversation about the barrage of information that is being pushed down our throats currently, let's go back to talking about the main point of this blog; my absurd health and the events that unfold.

  My focus today is my biggest frustration of the moment. I have mentioned it before, but this darn broken foot of mine. I am typically confined to my home due to my health. I have to nearly pack up the house just to leave for a few hours; meds, emergency gear, protective measures, etc. The current pandemic has forced me to stay in even more, which has actually proven good for my Lupus. If only all others would fall in line. Lupus is really affected by sun rays so the less time outside is reducing inflammation inside my body. I am getting cabin fever though. With my foot broken it is limiting my activities even more and that is driving me crazy.

  I went to the podiatrist two weeks ago for a follow-up hoping I would be able to begin using only the walking boot with no crutches. No dice! Everything is still in place and aligned which is normally a big concern with diabetics. That one was a relief. However, my foot is not ready yet. I was moved into a smaller boot. The first one went up to my knee. This one is mid calf. But I still needed 2 weeks continuing non-weight bearing. Then, the plan is to move on walking with the crutches as support the third week. The fourth week I will be allowed to walk in the boot without a scooter or crutches for one to two hours a day. I will see him after that week.

  I am on the third week. Although I am feeling improvement I am not ready to put my foot down too much so I am using the crutches and scooter just as I had. I have put a little more weight on it, but not much. Next week I will try walking in the boot with the crutches. I am just too afraid to push too quickly and end up spending more time recovering. Let's get'er done by taking it slow.

  My shoulder injury that occurred last fall was supposed to be a simple eight weeks of physical therapy. That turned into sixteen weeks, then twenty four weeks.....and then COVID-19 caused the facility to close so I had a home program to follow. I continued that until I had reached my final goal/milestone. All in all it ended up going from October until May. Except, the facility opened up again in June so they called me in. As terrified as I was to leave the house I thought they would see the progress I made and release me. HA. Nope. They started me back up to finish out six more weeks. At this point, however, my foot was already broken so they had to modify a lot of my exercises. Although I enjoyed the challenge, I had to let them know that until I could bear more weight on my foot I just wasn't strong enough to be so active. That length of time has challenged my patience and emotions greatly.

  With my foot slowly moving along, I am becoming more fearful of the actual length of time for healing. Not only do I need to take baby steps to start bearing weight, it will then take six to eight weeks before I can possibly get out of a boot. Once out of the boot I will need special shoes and/or inserts to support my foot. I will also have a lengthy physical therapy/rehab time. I have come to accept that. I believe in about a year I may be where most healthy people are after four to five months. A very healthy person I know had a four year recovery from a sesamoid fracture of the foot. That bone is right near the big toe embedded in tendons. My fractures are of the calcaneus and cuboid, which is the heal bone and the bone that attaches it to the last three toes. Seems to me, I am no expert, but it seems to me they are similarly difficult to heal because of their positioning. That being said, I am just a little overwhelmed with the thought of it all.

  I am an active person. Sick or not, I exercise everyday, multiple times a day. Not just because I have always been an athlete, but when I eat I must get up and move otherwise the food sits like bricks in my belly. Trust me, I would be fine with a morning workout and be done for the day. I prefer to walk around or clean or something similar for the movement after food, but right now I have to find a creative way to move after lunch and dinner to get some movement in. We recently moved into a home that sits on front of a mountain. My husband and son have spent a lot of time hiking and discovering new "Goonie adventure's" as my son calls them. I am so envious. I try to push that down because it is just the reality of the moment holding me back from joining them, but I miss it. FOMO.

  We also live in an incredibly beautiful rural area of NM. There are so many hidden gems and well sought out tourist attractions. All outside and wide open spaces so during this moment in history it is perfect. I have yet to visit my favorite lake that I hear is pretty full right now. I haven't been able to get to that area to hike around either. My parents live in the wilderness, but it has been ages since I have been to their property even though it is a mere twenty five minutes from us. There is a lot of "I wish I could"s going on here. That only makes me feel sad because that is a lot of negative and fearful thinking.

  As this blog typically is, it is helping me iron out my thoughts in a cathartic way allowing me to see what I should be appreciating. I can definitely say I am learning a lot more about my body. Because I have had to get creative with movement and exercise I am probably stronger now than before. Most of what I do is upper body work so my arms and abs are steel right now. There is a lot of total body workouts I can do on a yoga mat without putting pressure on my foot so my legs are still be activated. The movements I am learning from the online program I came across have trained muscles I rarely used before. It is also helping my shoulder because the abs, hips, and butt are the center of your body. Making them strong creates balance helping strengthen your posture muscles. That comes along with shoulder strength so....bonus ;-) My only hope is that once I can incorporate weight bearing exercises I don't lose sight of what I have created now. That is a goal I plan on focusing on as I recover.

  It being the year of shelter in place seems like the best time to be laid up with an injury. My hope is that maintaining my active lifestyle while hurt will help during the rehab phase. Since I will be going to the same facility for physical therapy as I did for my shoulder, maybe they can get knocked out together and I can worry about something else. Isn't that human nature? When all goes well, we still find something we long for. The good thing is, I know that to be true. with that in mind it helps focus your mind and heart on what you do have that is positive.

  Everyday I wake up and work to find something I am proud of and hold it close. When life is so overwhelming, focusing on small victories is the best medicine. Today has not been my favorite day, BUT I have my small victories. I got up before my alarm meaning I had good sleep last night. I woke up in a good mood. I completed my workout, enjoying it the whole time. Man it was tough though. This Caroline Jordan health coach is awesome. It is raining so this high desert is getting some good moisture. I had no control of that, but it is nice. And I was able to get out and deal with an errand or two. Let me just say, rain and crutches are not easy. Believe it or not, writing this blog today is a victory.

  It seems I have so much to chronicle, share, and inform that I often second guess every word. I truly want to help someone out there who may be struggling with similar issues. I want to keep my friends and family up-to-date. When all this first began in my early twenties, I had no where to turn for a road map on how to navigate such a complex web of diseases. I had no one to look to as a role model for keeping your head above water and managing these disease that seem to fight one another.

  I am a professional student. I love to learn and research. I rarely found anything. One thing I found solace in was learning that President John F. Kennedy likely suffered from the same rare disorder I have, APS Type II. A little snippet, they actually had him isolated for a while to give him steroid treatments so when he began to run for president he looked healthy and vital. All the while, even during his presidency, he suffered in pain daily. His back and adrenal glands really took him out. That is a small pinhole picture for you. There is not a whole lot written about it. Anyway, I needed a JFK to look to during those first few difficult years. I want to make it easier for a layman who may be ill or have a family member who is ill to find some real account information. Not just medical jargon, but real world accounts. I hope that this blog reaches someone who truly needs it. I pray that it leads them to better scientific research to gain knowledge. Science talks the talk, I walk the walk. Together we can conquer.

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. 

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.

Pros and Cons

After a brief break I am back to share my stories, worries, concerns, joys, and all that falls in between. I believe there is joy in all we go through. It is simply the intricacy of any situation that gives us the window to the beauty. I have been through a few twists and turns since we last met.
For several months, back into late 2014, I have been having these strange, painful, sudden then lingering cramps. Cramps are the only way I can describe them for lack of a better term. In mid March one of these sudden pains came on and dropped me to my knees. A pain that became suddenly debilitating, even to the point that I could not take a breath or call for help. After staying frozen long enough for the pain to settle down a bit, I called my doctor. The only way I can describe it is imagine you have eaten a super sized meal from McDonald's then took off at a full on sprint. A side cramp to knock a giant out would hit you like a brick. Now multiply that and imagine it remaining constant, but with sudden jolts sporadically. I went back and forth for a week or two with my doctor until he heard enough. He told me to get down to the hospital for admittance. Thankfully my brother and sister-in-law dropped everything to help with our son. My husband's family was ironically on their way to visit. It became a tag team situation until most of his family left, leaving behind my mother-in-law with us as long as we needed her. That was a true blessing.
Once admitted I was put on a clear liquid diet. This would be a major downer for anyone. One of the worst downers for me. I have been well over anything lemon/lime or jiggly for years now. Being a diabetic made it more challenging, as my doctor had noted it in my diet (explanation to follow). The next morning they quickly did an EGD/ endoscopy. I was still ordered to stay on the clear liquid diet thereafter. I tend to vomit often after tests or severe pain and this scope proved no different. The rest of the day was not worth ingesting a thing. IVs are certainly a life saver.
Over the next few days I was run through a battery of tests. So when I woke on that second day I read my diet allowance through and through, time and time again. Italian ice. Ok, that sounds pretty safe. I love the frozen lemonade or cherry ice you can buy almost anywhere during summer months. I called down and ordered a cherry Italian ice. I was quickly swept away for a quick scan. Upon my arrival I saw this melted red substance, somewhat jelly-like, with a strange white cream (if that's what I want to call it) which was obviously not clear yet allowed on this diet. It was not something I thought I'd like no matter what diet I needed. I decided to call down for some ginger ale considering the vomiting was only tapering off. "You are not allowed ginger ale."
"But it shows it IS allowed on the clear liquids options..."
"Well, you are diabetic and have already hit your carb limit until lunch."
Carb limit?! What exactly is my limit? I had no idea. The person on the other end and I played our little game for another few minutes. Me explaining I am Type I and have an insulin pump as well as being on the clear liquids reiterating my limited options. Him explaining I did have the option of a broth, which is also something I despise, or wait 4 hours before ordering. At this point I ended the conversation defeated. Then a light bulb. I asked my husband to run to a gas station and buy me some darn ginger ale for goodness sake. The nurse happened to be in my room at the time and said she would sneak down to the cafeteria and grab something she thought I could stomach. Within minutes I had some lemon/lime soda (oh yuck) with a small cup of orange sherbet. I asked for a cup. I decided to put the sherbet in the cup and pour the soda over it. Instant party punch. My husband then comes in with a six pack of ginger ale with a surprised look on his face because there I was with the lemon/lime soda he saw. When I explained, he was delighted at my starving, innovative ways to find a happy place. I was in such excitement when I got bumped up to a full liquid diet the next day, especially since we now knew how to work around the ridiculous carb limit.
We knew how to work our way through a lot of this due to previous hospital stays with similar restrictions. I slowly worked my way up to smoothies. With a little more substance in me I was overjoyed by getting the chance to roam the hospital when I got restless....every few minutes in my case. The pain had lessened up enough, though I was doped up pretty well by this time. I certainly could tell when my re-up was necessary. Throughout it all my doctor came by once or twice a day to check my progress or decline as well as give any updates to my family and me. Much of the stay blends together as you may imagine.
Two or three days in he came in with some information that set the stage. The endoscopy showed irritation around the leads of my gastric stimulator. There is a clear print out of risks with this stimulator, as with any other medical need, where it lays out the possibility of migration of leads, perforation of the stomach, and rejection. At that point in time, all they could definitively say was there was irritation and inflammation. He needed to communicate with Medtronic, the manufacturer, and was going to try to touch base with a national expert he knew well. The manufacturer asked for my records while communication with the colleague was difficult. Days passed with little to no new information or plan of action. It was discussed that the leads and/or device needed to be replaced. My doctor was tossing the idea around about different casing around the leads and different materials to hold them in place hoping to prevent the irritation. By that time he had determined it was rejection of some sort.
Along the way he asked if I thought I would be able to handle food. My eyes lit up, but my belly second guessed me. I opted to try applesauce with little confidence. My lack of confidence turned out to be a true finding. Vomiting ensued so I moved at a snail's pace. At day six I tried some dry cereal that soon turned in to shards of glass going slowly through my digestive system only increasing the pain I was experiencing. I gladly went two steps back and crawled even slower to solid food. By day eight, although I love my shakes and smoothies, I was ready to try again. This time I ordered scrambled eggs, a staple usually, and some potatoes, not hash browns. I made it through a few good bites. I was pleased to show my doctor when he stopped by. He wanted to see a little more before he would discharge me. At this stage of the game he had come to a decision to get me stable, discharging me, and continuing to search for a solid answer with me as an out patient. A couple of days later, I was up to half a plate of eggs with potatoes and showing clear signs of holding down fluids. He finally discharged me. He wanted to turn up the device a bit in hopes it would allow me to eat just a bit more. He also wanted to check back in two weeks for a follow-up with possibly another bump up. There were plenty of loose ends to tie up, but some strengthening and recovering time at home would be very beneficial.
I have seen him several times since. We have been left with the same lack of knowledge from others as well as the manufacturer. In another patient a replacement of leads or the device would be a no brainer, but my situation is different. What if my body just rejects what they do? What if my body is not strong enough to withstand another really major operation? How dangerous is this all? Neither my doctor nor I had any clue what our next step should be. He wanted some firm answers or strong opinions from others before he jumped the gun. In the meantime, he wanted to compile as much information as possible to present to someone or to show him light through the open door.
Many of these tests and scans were frightening, none painful in lieu of the pain we are trying to mend.
The last scan I had was a Gilliam scan, named after the man who discovered it. This is a three day nuclear medical test. The patient is injected with radioactive tracers. A special camera takes pictures from several angles while the patient lies still, usually on their backs, for 30 minutes to an hour. For me, that is when pain is at its most high. Flat on my back. On the third day a radiologist reads them and if something is seen at that time they will decide if more is needed. That extra imaging is an additional hour long scan. Lo and behold, I needed the additional time. According to the hospital staff my doctor would have the results within two days. He then would contact me with said results. Not my doctor. He is absolutely phenomenal, but he takes his time combing through everything before he says or does a thing. Admirable in this rush-and-go society.
Yesterday was my most recent appointment since the Gilliam scan. I am always a nervous wreck before appointments, no matter the health need, especially with my gastroenterologist. Add in the hectic freeway driving and navigating through Dallas equals an adventure in Laurentown. I was discouraged from the get-go with the simple number on the scale. I remind myself of my efforts in those moments. The doctor came in shortly after. Our assumptions proved true. The scan showed significant inflammation and irritation around the leads. The solution to this problem, you might ask. Remove the device. He decided replacing the leads would not help because there is no other casing. If my body is rejecting the casing, it would be wasted effort. The only solution is to remove the device. He then said we could leave it in if I could bare it until the battery dies. He and I went through a maze of, what we thought was, logic. I asked if there was any immediate danger such as additional damage being caused. He said there was not. I asked if it is affecting my small or large intestines and again he said it isn't. I asked how long the battery is estimated to last considering I am coming up on my second birthday/anniversary. Based on my settings his original estimate was three or four years back when I got it so that encouraged me. He said normally they simply replace the battery when it dies, but what he could do is replace the entire device and see where that leaves us. All the worries of keeping it in were somewhat hashed out. Ultimately, the decision is my own.
I have gone through this same scenario in my head for some time now. I have often told relatives and friends that I don't know what's worse, this pain or the pain I experienced before I had the stimulator. Now, that is exactly what I face. Here are my thoughts with some reliable opinions of others. With the device still in I am feeling pain, constant with sporadic jolts. Without the device I was constantly distended only growing as the day went on. That caused pain that increased throughout the day leaving me with a heating pad on my abdomen every night. With the stimulator in I am able to enjoy some "normal" food without intense fear. Without, I never knew when I could handle anything. With the stimulator vomiting and others are at a minimum. Without the stimulator it was daily and sometimes multiple times a day. With or without the stimulator I can hardly wear anything but elastic clothing. Without the stimulator I would have more canvas for my insulin pump and continuous glucose sensor. I hardly weigh a thing, but who knows if or how much that number will drop if the stimulator is removed. I was also reminded of how much more isolated I was before I had the stimulator. I would sleep a lot usually ending my day around 6:00p purely out of lack of energy and strength. I was also candidly reminded how close I was to death before I had the stimulator. In writing this post that statement has come to the forefront of my mind because it is a reminder that I celebrate the implant date by calling it my birthday. It was a second chance at life that day. I was blessed to have the option.
As I tie up my post for now, I leave you with the question. What would you do faced with a decision so serious, but choosing the lesser of two evils? Do not get me wrong, everyone has their cross to bare. I am simply asking how you would come to a decision. Would it take an instant to make a final decision? Or would it take some intense thought and needle searching for answers?
I will not lie and say I am ready to make a choice. I can openly say this is weighing heavy on me. The difficult part is finding an objective view because the pain is indescribable no matter the choice. The uncertainty and isolation are the same no matter the choice. I have love, support, a son who is a tornado of joy, a hard working husband, a nice place to call home, and more. I get out and interact, just not as much as my counterparts. I go on long walks. I read good books. I have so much and yet somehow the hardest decision clouds all of the amazing gifts.
Today I choose to hang in there. I choose to manage my symptoms as they stand. My doctor said my physical activity and life should not be an issue. He said to do what I can handle. So I choose to listen closely to the pain and work around it. Tomorrow, next week, next month I may change my mind. I may decide I can't take it anymore. I am at peace knowing what it is, but I am war between emotions and clear thoughts. And you yourself are probably reading this with a major decision in your life. Maybe we should just stick to the moment to see where it takes us.
As I said to my doc as I was leaving his office, "trust your gut" no pun intended....but it sure is funny if it was intentional.

The Gap

I recently was hit by a crash course on the infamous 'donut hole' we all hear about in relation to Medicare. Being in the situation I am in, candidly I am disabled and only have Medicare, I am susceptible to this unfortunate guideline. For years living in New Mexico I was covered under Extra Help. I never knew exactly what that was, but I had little to no costs for my prescription drugs. Moving to Texas in 2013 obviously changed many things.
When we first moved to Texas things seemed to be running smoothly. I updated my contact information and lost no time receiving my benefits. I needed to enroll in a new Part D Prescription plan because they vary state to state. That was a bit confusing but with a lot of questions and tenacity I figured it out. Because we had moved here just before my major surgery and my husband stayed home to care for me, I qualified for Medicaid in Texas. Why not take advantage of all the help you can get if you are doing your best to help yourself? I did not understand that it was a short-term qualification due to the fact I had no idea how they determine eligibility.
Every year Medicaid reviews all cases to determine requalification. They send out a notice with your information on it, ask if anything has changed, require a signature, and give you an easy prepaid envelope to send it all back. Neat and tidy. Well, not so neat. Thinking nothing had changed because my husband has worked the same job for seven years and I have received the same check for the last several years, I was shocked when I received a notice of loss of coverage beginning August 1, 2014. After running in circles trying to figure this determination out I was finally told that I had only qualified due to my husband's need to stay home while I recovered. Although the surgery was a year ago I had been covered all that time. I had no idea they allowed a year for this type of coverage. I appealed the decision due to extremely high prices for my prescription drugs, but I was denied. Since then I have hit dead ends time and time again.
I was told many times, in my efforts to regain the coverage Medicaid was providing, that I should apply for Extra Help. I continued to believe I would continue to have it because I had no idea I had it in the years prior. Finally I came to understand that Extra Help is actually a low-income subsidy that helps pay for prescription drugs. Now, our family is no where near poverty. We are simply in the same cast most of the nation is in at the moment so, again, I had no idea what or why I had these benefits. I assumed, biggest mistake we all make, that this was how Medicare worked. I never saw a 'donut hole' in my coverage so I assumed, bad girl, it had something to do with costs I don't run across. I became disabled at 25 and became eligible for Medicare at 26 years old. We are all just beginning to understand employer insurance dealings, let alone Medicare. I should have done my research.
Losing Medicaid and Extra Help seemed like no big deal to me. I had put my nose to the ground to find a Medicare Advantage plan that would cover more than traditional Medicare. I found one under United Health Care and it's great. It covers everything I need at locked in out-of-pocket costs. It comes with one downfall I did not know about Medicare Advantage plans. They all follow Medicare guidelines. In comes that dreaded 'donut hole' possibility. Again, I didn't realize it was approaching because I had lost Medicaid in August so I assumed, here's that word again, that meant Extra Help was gone as well. "Extra Help" sounded very much like Medicaid, interchangeable. Is Medicaid not extra help that you could receive? It was/is to me. No, no, no. Extra Help is actually a program. My Extra Help ended December 31, 2014. I received a notice, yes, but Medicaid, Medicare, supercalifragilisticexpialidotious. ??? These notices were foreign to me. Even employer and private insurance is a mess of jargon and loop holes no one understands. Now we are in the early months of 2015.
My husband works at the pharmacy where I get my prescriptions. He is nice enough to take control and make sure I get refills and such on time. He refilled everything he could at the end of December just in case a deductible, we didn't see coming, hits. I had one in the past so preparation was smart. I'm glad he did. With that in mind you can imagine it took me a bit to need a refill. "Insulin. That'll be $200+. Seizure medication. That'll be $260. Colitis. $95. Digestive enzymes. $45." Cough, cough, cough.."uh, WHAT?!" Something must be wrong. The pharmacy called my insurance while I simultaneously called for myself. This is when the nightmare began.
Here's how it works. There is a deductible to be met, $160. Then you begin paying for your drugs under the Tier system, a prescription vocabulary word meaning what category a drug is placed in. If you ask how they categorize drugs you will immediately realize no one really knows the answer. Tier 4 drugs are $95, Tier 3 drugs are $45, Tier 1 and/or 2 are around $8, and anything not in formulary....well, I haven't been able to decipher how they determine pricing, but obviously I have some. You have a limit of $2960 before you hit the gap or 'donut hole', this number is a combination of what the plan pays as well as your own out-of-pocket costs. Once you hit the $2960 you fall under 'gap coverage'. In gap coverage you pay 65% for generic drugs and 45% for brand name. If you look at that in terms of an actual prescription it does not look promising. One, just one, of my seizure medications is over $1000 for the generic meaning I am going to pay over $650 for one prescription. I have ten, four of which do not have generics available as of yet. What happens next you ask? Catastrophic coverage. Catastrophic coverage begins when your out-of-pocket costs, not the plans pay out as well, hit $4700. In this stage, you end up paying only 5% for your drugs. With a person like me you would think that would be hit quickly, but they get you when they start by counting their pay out as well as yours then do a switch when it comes down to counting only your costs. $4700. Do you have that under your couch cushions? Could you even follow the maze of numbers outlined? After a month and a half the pharmacy and I finally saw the potential for financial destruction. It would be difficult for any person or family to afford that every year when they have maintenance drugs long term. Even quick prescriptions could put a dent in your pocket. It is unbelievable that they help you get in the donut hole and retroactively eliminate their help to keep you in the hole. Capitalism and health care do not belong in the same sentence, let alone used against ignorant people.
Ignorant may seem like a derogatory term, but it is not. It definitely does not mean we, as patients, are stupid. It simply means we are uneducated insurance navigators. A lesson I learned the hard way. Be informed. Be prepared.
Every year we receive this giant package with a huge book and some pamphlets that drop out here and there, all regarding our benefits and any changes. Most of us keep it but it is never opened. Some toss it. Rarely does anyone actually dive into it. Hear me loud and clear when I say OPEN IT. Educate yourself. Use what you know about yourself for certain to begin. For myself I looked at hospital costs, ER co-pays, office visit co-pays, procedure out-of-pocket costs, and I simply checked to see if my drugs were on the plans formulary. I only looked at what I'd be paying, at the moment, for my drugs. I never looked beyond December 31 or thought to look at deductibles and stair steps. I knew I had lost low income subsidies and I spoke with the insurance agent about it. I am sure he tried to cover all his bases before I decided on a plan, but I was probably selectively hearing what I thought was important. Assumptions and arrogance will never do you good.
I thought I knew it all. I had been to school and worked in the health care field, my husband works in a pharmacy, and I am a very involved patient. I believed any "assumptions" I was making were "educated guesses". Two very different things. With those two words seeping out if my pores as I crumbled under the weight of cost versus need for meds I knew I had to figure this out but I didn't know how. I was embarrassed, humbled, and desperate.
I had options and I had to move fast. First, I called upon my parents for immediate assistance while I pulled myself together to get myself of the floor. My sister is a bulldog and will stop at nothing to make her little sister's life easier. An angel. She and I pulled our ideas together and bounced them back and forth to iron out details of each option. Here is what I faced and many Medicare patients have to face:
1) Divorce- If you are married the government takes the household income as a determining factor for low income subsidies. Couples who have been married decades sometimes get quiet divorces with all the legal necessities laid out in the divorce to cover what is appropriate for them. Children and family often are in the dark about the divorce, but it is the only way some people can afford medical care. This just wasn't an option I felt comfortable with for my family.
2) Talk with your doctor- Often times doctors can change a prescription to a lower cost drug to help the patient afford their meds. Many patients either talk to their doctor during a typical visit about what they can afford or what their plan will cover and the doctor obliges. It may also apply to office visits and procedures. Many times the doctor can schedule things in the most affordable ways for the patient. This does not work if there is no leeway for the doctor. In my case, there was no leeway for meds or office dealings.
3) Buy private health insurance- We hear about supplement plans and advantage plans for retired, elderly, Medicare patients. What many of us do not realize is these plans are not for disabled. In the state of Texas all insurance providers have to offer at least one Medigap plan for disabled under 65 or those with end stage renal disease. The catch is they have to approve you just as Medicaid or Medicare would, but each plan has different requirements for approval. In addition, plans that are associated with Medicare, meaning they are offered to patients or coupled with Medicare, have to follow Medicare guidelines for prescription drugs stair step set up. Medicare deducts a premium from your benefits check each month. Buying private insurance would also require a premium. Add in the out-of-pocket costs and it may not be very beneficial. In my case it was a moot option.
4) Stop taking prescription medications- I actually contemplated this because I was at a complete loss. We all see how blatantly wrong that actually is. Any where between 12-28% of Medicare patients stop taking their medications only because they cannot afford them. This is incredibly dangerous. Bottom line says you can't squeeze water out of a turnip and turnips sure don't pay for meds. That is my case. I had to look at it like this, not taking medications is deadly but financial ruin is not. Figure out a way to pay.
5) Get a loan- This sounds good in theory. If you take enough regular medications to get into the gap or even to get to catastrophic coverage you need extra money to pay for it. Loans are extra money that you have to pay back. If you can't afford it in the first place, how can you afford to pay back a loan? It may work for some. If that is what gets you there who cares what I say? I did the math for my situation and it would take two years for me to pay back a loan I would get to pay for one year of my medications. Tack on next year and the year after. Soon enough, I wouldn't even remember how much I owed or the bank would lock the doors every January when they saw me coming.
6) Online discounts- It is very possible to find discounts for medications online. Sometimes the manufacturer offers discounts. The drug reps even bring coupons to the doctors' offices and pharmacies. It is a bit tedious, but worth it. Common medications and new medications are the easiest to come by. Get into that cloudy area of lesser used meds and it can be tricky, sometimes hopeless. That was the way it turned out for me. It got to a point where the manufacturers customer service reps were making me feel like the biggest idiot on the planet. I got spoken to as if I should already know what discounts are offered. I even ran across a lot of them who had no idea the company they worked for made a drug of that name.
7) Employer insurance- If you are retired or disabled this option is often null and void. If you are married you may be in a good place to add coverage to your existing Medicare plan. Of course, as with any insurance, you have to wait for open enrollment which does not happen in January. If you are knowledgeable and prepared, jump on that open enrollment railway. If not, don't fret until you have exhausted all avenues. If a life event happens most employer insurance will allow the employee to add a dependent to their benefits. A life event includes marriage, divorce, death, loss of job, etc. It is determined by the Benefits Department or Human Resources. I, luckily, landed in this category. Due to the fact that I lost my low income subsidy, Extra Help, as of December 31, 2014 I was within the timeframe....sort of. We didn't apply for the addition until 45 days had passed. In our favor, for Medicare patients the time frame is widened a bit, but I also showed proof of attempts to appeal and/or manage the costs ourselves.
These were all the options given to me by Medicare, my insurance agent, my family, my research, you name it. It is hard to believe that these extreme options are all Medicare patients have to turn to. My words (I cannot call it wisdom) are to be fully educated on all your health care needs and options. We knew from day one that I could be added to my husband's insurance when I had to stop working. We got information on costs and laid out a pro's and con's list. Our immature minds thought it would take too much money out of his check so we couldn't afford it. Even when we came across this weapon of mass destruction called "The Gap", we got more information and laid it out. I was so certain there was a better option. I was so certain the government could not put people in need in such a difficult situation. I was certain other people in my situation had more options I just hadn't found yet. After trudging through the minefield of costs, information, and misinformation we came to the final decision to add me to his coverage. I can proudly say I have a PhD from the school of hard knocks in Medicare and its options.
I have always been an overachiever. School came easy to me and I thirst for knowledge. I have been entangled in the medical world since before I could even drive. Yet, I was so ignorant. I probably will come across more obstacles that humble me with my own ignorance on the matter. This, however, drives me to be even more active in the changes and guidelines outlined for any and all coverage I get. I learned to save receipts for tax deductions. I have a file folder for it all. I organize and juggle appointments. I am diligent about my medications. I research every aspect of the diagnoses I receive along the way. I am the poster child of Type A personality. I missed this. I missed some of the most important information I need. I actually didn't miss it, I disregarded it.
I don't enjoy complaining. I don't enjoy laying out financial struggles. I don't enjoy spilling my guts about disability and Medicare. I certainly don't enjoy Medicaid. The truth is, these topics have a negative stigma. A few people abuse the system and  it puts a bad taste in the mouths of those working so hard and still paying towards the system. But, if you flip that you see that many who paid into the system and did everything right often need to rely on that system. Someday we all do. Take the stigma away. Away from finances, needs, and charity. We all have them in some way, shape, or form. And charity is exactly that, charity. If we cannot open the conversation about some of the most common struggles for many Americans today, we continue to live in a lie. A lie that is turned in to a façade'. A façade' of a carefree, luxury filled life. Underneath that façade' is debt or secrets or holes. God put people on this earth in masses to come together as a community and help each other. We all have a place in this world, but we are all needed or the puzzle isn't complete. This includes knowledge. Get out there and make sure all your ducks are in a row. If you see someone struggling along the way and you have knowledge that may be useful, pass it on. These tangled webs of money making health care fields are impossible to get through without an armor of knowledge. As embarrassed and humbled as I am by all of this, I am proud to have found a solution. I can now move forward with more wisdom. I have many years to come and yearn for more wisdom no matter how hard it knocks me down.

The Slump

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


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


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


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


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


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


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


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


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


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


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


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


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


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



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

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


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


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