Deena BinghamMy Lupus journey to being a career patient is a path that those of us diagnosed with a chronic condition will ultimately have to learn how to navigate. My way of handling new projects, bad news, tragedy or stress has always taken the same route. I am an emotional person, I deal with most things first with a burst of emotion and I don’t discriminate between them. No matter the emotion I handle them all the same and with the same intensity. After this initial burst of emotion and telling myself either I can’t possibly “do this”, or feeling like the sky is falling, wanting to hide in a cave (or under my covers), and some procrastination. I then progress into acceptance and start to plan how I am going to solve or fix whatever dilemma or project has arisen. If you know me, then you know I at this point tend to get a little obsessive! Then I usually accept, move on and navigate the problem most times with efficiency and as mentioned, obsessiveness. This is how I deal with most things, but the one exception, until a year ago, has always been my health, my disease. I never attacked my health management like I attacked everything else. I made attempts, but I stayed in the emotional part never quite moving on to the managing part. Thinking there was nothing I could do about it.
During all of these years of building my career, resume, and working I was also fighting a constant battle of never feeling well, physically and emotionally. I have mentioned in other posts that I always felt like a hypochondriac! I was trying to have a career, be a part of my community, a wife, a mother and handle all of life’s struggles. All the while never feeling well and thinking there was something wrong with me mentally. These were not easy years for me. By the time I reached my late thirties I was so exhausted from trying to have it all and always feeling sick on the inside, but not looking like it on the outside. Thinking it was all in my head. This was a personal battle that was constant in me. Reconciling the accomplished person everyone thought I was to the person inside of me that just felt like she was always sick, in pain and thinking that I was a mental case and a fraud!
For years just I didn’t attacked my disease like I attack everything else. One of the main reasons for this is because I felt like I was the one doing something wrong! I know, crazy, right? I had a disease and I felt like it was my fault! This is a common feeling among a lot of us with chronic conditions. A feeling that is perpetuated by some in the medical field, not all, I have found some amazing doctors and feel very blessed because of this. Autoimmune disease and conditions are hard to diagnosis. Often times leading to a diagnosis of mental health conditions rather than Lupus, Lyme Disease, MS or a whole host of other medical conditions. It could take years to get a diagnosis! There are over 150 Autoimmune or Autoimmune related diseases!
We all have big plans when we are younger, I was going to have an awesome career, save the world, end hunger, have a family, be a famous actor or model, invent something awesome and possibly be the President of the United States or be a long lost princess (I am still holding out hope this one will happen) :-), all by the time I was 30! I never planned to become a career patient.
The following is a brief synopsis of how my work career evolved:
Well, we all have to start somewhere and I started in restaurants and fast food. One of my jobs was at Burger King, but unfortunately during my shift one evening a bomb threat was called in, they evacuated us, investigated the site and then told us they couldn’t find anything and we could go back to work. This was the same strip mall that six months earlier on April 23, 1987, William Cruse shot 16 people, killing six, and wounding many more. There was no way I was going to get blown up! In my seventeen year old mind just because you couldn’t find anything doesn’t mean the bomb wasn’t there especially after recent events! I abandoned my post at the drive thru window, called my dad to come pick me up and that was the end of my fast food career.
Moving past high school amid taking classes and working in restaurants. I waited on someone that worked for a Real Estate Inspection Service and they needed a secretary, I was hired and this began my interest in computers. My inner nerd was born!
Eventually my husband and I moved to Orlando where I took classes and held many positions: cocktail waitress, bartender, Hooters waitress, bartender and bookkeeper, (yes, I was a bookkeeper for Hooters :-), and Disney Property Hotel Employee. I even modeled and acted, did some commercials and a sitcom pilot for Universal Studios.
My husband, his business partner and I opened a fine dining restaurant, which I helped run and manage, as well as stakes in several more bars and restaurants in the area. During these years I still had a knack and love for computers. I was fascinated by them, this was before the internet was so user friendly and with the help of a friend who owned a print shop I learned about graphic design and the newly emerging internet, this was where my love of computers really took root. About the same time my brother-n-law gave us a computer, I learned how to dial up and became a computer junkie, I self taught myself how to research anything, and I could teach myself almost any computer program.
In 2008, at the age of 28, we sold our restaurant in Windermere, Florida. During this transition a business man in the area knew of my interest in computers, after many conversations at the restaurant about what I was going to do next he made me an offer. He told me if I could come to him and explain how a computer network worked, the process of how to build a network in his 20,000 square foot house, and tell him what a MCSE certification was then he would offer me a job. After researching for months, (did I tell you I can get a little obsessive about things) I finally met with him, told him about my new very basic understanding of what he had asked and he hired me. As one of his assistants I learned from him, his wife and his sister about documenting and tracking finances, researching in depth on the internet, construction and project management, writing a critical path, and computer networks. This was where I acquired my joy of making spreadsheets! It was an amazing experience and this then led into my next job as a operations assistant/project manager for a telecommunications company. I was the liaison between corporate and the field and even though I wasn’t the person responsibility for the field work, I was responsible for making sure all of the jobs were on track and completed on time, I was accountable if they weren’t. If there was a problem it was up to me to figure out how to solve it! The jobs above were especially instrumental in my future as a career patient.
Then in my thirties my husband and I decided that we needed a change of lifestyle, a much slower paced life and a simple place where we could raise our children other than Orlando. We decided to leave the rat race. This led to the purchase of a 160 acres in the mountains of WNC, which is another story in itself. God really knew what he was doing when this plan was put into motion. He knew that I was about to get very sick and was leading me to a place where I and my husband would be much more equipped to handle it.
After our move to NC we opened a daycare and preschool, as business people we knew that the area we were in needed quality child care and we felt we could fill this niche. We were both the board of directors for the center, I was the director and administrator and my husband shared these and teaching responsibilities with me. This was a difficult time in my life. The time I was eventually diagnosed, had my mental breakdown (read my post, Anxiety and Disease an Honest Post )and began the process of become a career patient.
I tell you all of this because every job I experienced above was training ground for managing my career as a patient. We all have experiences, work or worldly. Every one of those experiences teaches us something and builds on the next. It is up to us whether we remember those lessons. It is the same with learning how to navigate the world of having a chronic condition. Every experience we have as patients is another step on the ladder of mastering our career.
As mentioned in previous posts I spent years in and out of the hospital, always starting over each time but getting sicker and sicker and flaring constantly. Other than my rheumatologist, Dr. Kristin Gowin, at Asheville Arthritis, and hospital staff, I never felt that my doctors listened to me or truly believed that I had Lupus. This began the process of finding a primary care physician that would listen to me and partner with me and my Rheumatologist. It’s a must with a chronic condition to have your doctors, hospital and specialists communicate with each other! I can’t stress this enough! Eventually I was referred to Dr. Kelly Rothe, at Mountain Medical Arts, in Burnsville, NC. I truly believe that she saved my life and I would not be writing this blog post today if it wasn’t for her! That being said, even after finding her I still felt like I was doing something wrong and that it was in my head. I was there with my doctors but I was never truly present, and I did not partner with them, become invested in my own health or become intentional until approximately a year ago. As mentioned before when I got to the point when I thought I was going to die and knew I couldn’t continue on this cycle of in and out of the hospital, I drastically changed my lifestyle. Not the haphazard attempts from previous years, but I attacked it in the obsessive, professional way I did every other aspect of my life! I made a plan, and as mentioned countless times, I became obsessive! I know that there is no cure for Lupus, but I can define how I manage my disease and not let the disease define me! I knew that every aspect of my life needed to be connected to management of my condition. The honeymoon period on this new career was over and it was time to take charge.
I changed my mental outlook. I no longer believed it was my fault that I was sick or that it was in my head. It was Lupus’s fault, my own body wanted to kill me and and I prepared for battle. I became a career patient. Just like I would for a profession I learned and read everything I could find about autoimmunity and Lupus. I created my own Lupus University! I read all of the current research, learned which supplements worked best for me and considered the long term effects of my medications. Through this process I found the best medicine, supplement and nutrition cocktail that worked. What had the least amount of side effects but helped my have a better quality of life. I weighed all of my options and I still do because my disease can change at anytime. All of this with the partnership of my doctors. I can’t stress enough, work with your medical team and if they don’t partner with you find a new team! Make a plan, research diets that work for you (not fads), start to exercise one little step at a time. There is a physical fitness or exercise program for everyone no matter how severe your condition is, research it and work with your medical team. If you can only lift one finger, then darn it, lift that finger, then two, then three! I started my routine one day at a time, one step at a time. If I failed I started over, again and again. I still start over every single day, but I promise you the more you fight the easier it will be to continue to fight.
This process can take years so if you are reading this don’t despair. Know that I have walked a mile in your shoes and know that I have felt the frustration, darkness and uncertainty that you feel. I still do at times. I started this blog post yesterday with the intention of publishing it the same day. That didn’t happen, I went down with the stomach flu, I threw up for 8 hours straight and am still very weak as I write this. I tell you this because I was very frustrated. Frustrated because it didn’t attack every one else in the house as severely as it attacked me. I was discouraged and mad that being immune suppressed and having Lupus made it worse for me. I want you to know I have my days of depression and despair. You really aren’t alone. I write this so that you know that there are always going to be bad days and really bad days. We decide how we are going to ultimately handle them long term. Set backs and all! As I have read on other social media and blogs you must be a Lupus Warrior! Prepare to fight, build your stronghold and become a career patient!
Once again thank you for being a part of my journey and letting me be a part of yours! I pray that I gave you some hope & encouragement today in knowing you do not fight this battle alone and that this posts helps you in some small way.
Take the time today to find your joy, inspiration & passion! God Bless you all and I will talk to you again soon. Deena
