I have been trying to dictate my 2010 update since Dec 2009, but I haven’t been able to focus. For my 2009 update I was still bipolar enough for a manic episode to provide for a zealous writing opportunity about previous years experiences. Three months have passed waiting for some special inspiration for a frame to review 2009 and introduce 2010’s goals. So I am going to freely summarize just what all has happened since my last update and see what I conclude. I began 2009 with my new holistic philosophy: Surviving The Disease requires healing The Mind, The Body and The Spirit. With this new mantra I had found a sense of contentment despite not necessarily solving all my problems. I had wasted too much energy in past few years in anxiety over the effects of my illness on every aspect of my life which was only contributing to the severity of illness.
I was still under the financial strain of managing without child support on the mere $1050 in Social Security Disability benefits, but somehow the lights stayed on and my mortgage was paid. I was living from month to month in finances, but my new philosophy was to live day by day. I had made up my mind to only deal with the here and now. I paid what I could and bought only what I absolutely needed. Soon you realize how much you thought was really needed isn’t a necessity after all. I neither worried nor made plans about any future events for which I currently had no control over. I began to only cross bridges as I got to them. Although I continued to suffer from severe neurological deficits, they were no longer escalating. Improvement had come from acceptance and compensation for them. Most importantly with more information about APS and NPSLE, I was not feeling so out of control and crazy. This mental chaos was no longer personal. I could objectively recognize it as the symptoms of frontal lobe damage. The results of neuropsych testing had given me specific deficits to target. Superior IQ results gave me confidence that notwithstanding my inability to communicate the way I used to I was still the same intelligent woman.
Medicare was willing to pay 80% of the suggested neurofeedback sessions, but I still couldn’t afford the other 20% on just disability income. Without any professional counseling, coaching or therapies available for rehabilitating my damaged thought processing; I have been left on my own to come up with ways to exercise my brain and recover abilities. Out of compulsion and hyperactivity I began many small noncrucial “projects” within the interface of the computer and internet where I felt most comfortable. Inside the virtual world, I could take my time, spell check, copy and paste, my way to coherent communication. The internet allowed this aphasic, dyslexic mind visual comprehension through icons, avatars and multimedia. Having difficulty composing an entire paragraph of thought, I found the 140 character twitter update box a perfect venue for expression. I began daily tweets on my favorite intellectual pursuit (classic movies) as a repetitive task to organize and focus my ADD mind. As an aspiring web developer I was also providing myself with an internship in the latest development in social media as well. To my surprise I gained 1000 followers the first month! Because of my neurological breakdown, I really lamented my career goals being thwarted. By January 2009, I recovered some of my HTML/CSS skills to customize my ACMLS blog and start a Ning community website to beta test for fellow lupus survivors. I joined facebook to communicate with some lupus friends and found over 100 more. Since then I have been encouraged by a few blogger awards. As the spring of 2009 began I was finally beginning to feel some equilibrium. In fact, I was in the process of writing a blog with “Contentment” as the working title. On Easter weekend, my new philosophy, and my faith were tested like never before.
Without warning, I found myself writhing in pain which led to my son calling ambulance to take me to hospital emergency. By Easter morning I was having an emergency surgery for ruptured colon. I woke up with a colostomy! The trauma of the surgery on a body already weakened by lupus meant I didn’t even have the strength to turn myself, let alone stand. I was completed disabled--bedridden again at the mercy of the nurse call button and whomever happened to answer. I was in diapers because I couldn’t tolerate a urinary catheter and oh yea, I had a bag on my belly for the other. NOT LOL. I also had a gaping unstitched opening at least 6 inches wide from being gutted from my panty line through my navel. I have always been a pretty good trooper through thick and thin, but this was just tooooo much. I’d just begin to feel some rehabilitation from the long term effects of 2004 lupus episode and its complications. I was finally feeling “contentment.” It’s just not fair for me to be dealing with this. Why ME? I tried to keep a good face, as that’s all anybody seems to expect or allow from me. But honestly, I was not doing well. psychologically I don’t think I have ever been lower. There was no encouraging word to make me feel better and I was really getting sick and tired of people trying to encourage me. Not one of them had been through what I have gone through. They might be able to commiserate with one; maybe two of my life’s many tragic events. Frankly, I just wished they’d admit that this was an awful thing to happen that I didn’t deserve. Instead of repeating the same old platitudes such as something good is going to come out of this tragedy.
The fact is that bad things happen. Bad things happen to good people and bad people. Bad things can happen to anybody. Nothing good may ever come from it either. In order for me to go on, I had a choice to live with this bad thing or just give up and die because of this bad thing. My insightful son made it simple and plain. Mom, you could be dead without the bag or alive with the bag. Obviously I chose life. I realize that the good or bad outcome simply was the perspective I decide to take going forward. There is no guarantee that I had reached my limit on tragedies so I’d better come up with something better than simply not deserving them to deal with them. That outlook is a mine field for depression or insanity. I decided I could choose to find the best perspective possible no matter what tragic event life brings. This was how I had found days when my lupus and fibromyalgia pain was high; my spirits could still be higher by seeking something pleasant around me.
It took 2 months in the hospital and a rehabilitation center of grueling therapy to regain the strength to stand and take steps on my own again. I rushed home in time to see my son take his girlfriend to prom in May. The neurological deficits I had added another dimension to the difficulty learning the sequential steps and coordination necessary to care for my colostomy and maintain my own surgical site which was still a large open wound. (That’s a whole other epic story) Having no one nearby to help me, my best friend from college brought me to her home to convalesce in June. During my visit she suggested that I moved to her little town. So I did. I gave up my house and the city life for an apartment in a town of just 45,000. With that said, I believe I have come to a conclusion: Less is more! Since I have been in this town with less people, I have gotten more attention. Transportation isn’t so hectic with all my medical appointments and errands in the same zip code. I think it’s because more people have less to do and are willing to offer more assistance. Living in 1000sq ft ground level apartment instead of 2000sq ft 2 story house means I am more able to manage my home independently. Having downsized my environment and simplified my lifestyle I am making the most of my mental and physical abilities. It has been almost a year since my colon ruptured. It’s almost spring now and I am just about settled down to regular routines in my new home. My son has just turned 18 and received admission to college. For the first time in twenty years, I am looking forward to being on my own. The future is both hopeful and scary but I believe I might feel “contentment” again.
The Lupus MCTD Foundation of America has nominated you for our Courage Award.
The Courage Award is being given to you for your public contributions in raising awareness, as well as your demonstration to other's as a fellow patient. Lupus Warriors are people who have overcome many challenges, who have walked through experiences having gained a renewed spirit and determination to thrive. Have gained the spirit of endurance through their difficulties and have in turn help other patients. You exemplify the inner strength of a Lupus Warrior and an empathy that makes your service work to other's rooted in compassion.