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.