Deena BinghamIt has been close to a month since I have been able to write anything because of a recent flare and I had to be hospitalized. This has been good and bad for me. I say it has been good only because it has enabled me to spend time in contemplation, bad because I’ve been frustrated and discouraged. It had been thirteen months since the last time I had been in the hospital. Which is a record for me.
I am not able to read or write much while I am in the midst of a major flare. My Lupus manifests itself in the form of non-infectious meningitis: migraine, nausea, vomiting, photophobia (sensitivity to light) and an altered mental status (confusion). When I flare I have trouble finding words and processing them. I also can’t read during this time. Normally I am a very avid reader and can sit down and read a book in one afternoon. Sadly, during a flare I just keep reading the same sentence or paragraph over and over, it’s nearly impossible for me to process anything, so writing a blog post is very difficult. This is very frustrating as some of you know who have limited functions during major flares of your conditions.
Having been in the hospital 4 or 5 times a year for the past several years it was very encouraging to me to reduce the number of flares, even though I battled a flare since early December. ~ My words ended yesterday with the previous sentence, and then my next sentence was going to be: “I owe this long streak to the overall changes I have made in my life; nutrition, diet, exercise and mental outlook”, and I had every intention of continuing my post today about my hospital experience, the frustration, how quickly I recuperated this time because of the lifestyle changes, but then an unplanned conversation changed my mind and my heart. Thus begins another story about how I have learned to live a good life with Lupus, but this time I need to talk about how and why I have the strength to do this.
I am sitting in South Florida right now staring at the beautiful scenery before me and have just had a conversation with a very nice gentleman named Steve that lives next to my mother-n-law. He mentioned to me that he had read my blog and that he enjoyed the conversational tone and the fact that I was using my story to help others. I thanked him for such nice comments and appreciated his encouragement. We then had a conversation about what I was reading. I mentioned that I was reading “The Daily Message: Through the Bible in One Year”, by Eugene Peterson. I explained how I enjoyed reading bible passages and studying them in our contemporary language. I mentioned that my faith, with God’s help, had a lot to do with me taking control and learning how to manage my disease. His next comment really struck a chord within me. He mentioned that he didn’t recall me talking about my faith much in my blog posts. That is when I realized that this new post needed to go in a different direction then originally planned. I was not the one in control of my wellness, God is.
Over the last few years I wouldn’t have been able to mentally handle Lupus or my serious flares if I wasn’t a Christian. My faith in God, Jesus Christ and my prayer life has played a major role in me being able to take control of my health. I mentioned in one of my posts, Anxiety and Disease An Honest Post, that when we have a chronic disease or condition we go through a continuous loop of the Five Stages of Accepting an Illness. What I didn’t talk about was the major role God played while I was going through these stages.
The article I referenced above talks about each stage and if you get stuck in any one of these stages then you should get help and see a therapist, I believe that this is true, but we should also work on finding our inner peace and joy through prayer, study and reflection. In the “about me” section of my web page I mentioned that handling my disease “has been a process with lots of triumphs and failures along the way. I feel and look healthier. My disease is still there, I still flare though not as often and I still battle daily physically and mentally BUT I have learned that my disease does not define me. No matter the final outcome, eventual cure or not it does NOT define me. It does NOT dictate how I live my life and it does NOT define what kind of person I am. I am not Deena with Lupus, I am Deena a child of God! All I can do is start over everyday, pick myself up when I fail and know that I belong to God. He has a plan for me”. I believe everything that I said, but I don’t always do a good job of staying on that path. Sometimes I veer off the path and have to find my way back to it.
Let me address these stages and how my faith has changed and grown over these past years.
When I was first diagnosed I was angry at God. I spent a couple of years or more asking: Why me? Why am I the one that has to have Lupus? Why am I always sick? God, why are you allowing me to be sick? I remember reading that having faith will heal me! Did I not have enough faith? Am I being punished for things that I did in my past? Is this why God isn’t helping me? I even remember being angry at my friends and loved ones. I hated hearing God has a plan, there is a reason for this, you can’t see it now but you will some day. Hearing these words made me even angrier at God and made me doubt myself and my faith. It took years for me to reconcile my anger with God and realize that He didn’t make this happen, but that He truly will bring something good from it, if I would only allow Him to do so.
After my anger stage ,which probably lasted much longer than it should have, I went into the denial stage, ignored advice about my health, took too many medications, went in and out of the hospital and was never really consistent about my health plan. I became overweight from the steroids and infusions but continued to eat what I wanted because I blamed my cravings on the medications. Don’t get me wrong, in between these stages I tried to stick to a plan but I always went back to my bad habits. As a Christian I believe the Holy Spirit lives within me and because of this I should treat my body as the temple that houses God. Through prayer and asking God for help I finally start to learn how to treat my body this way. Through this I knew it was time to get intentional about all aspects of my life or Lupus was going to define me. I truly believe had I continued along my previous path I would not be here today telling you my story. God made it possible to get to where I am now, He gave me the control for the care of my disease.
Woven in between all of this was the fear. Being immune suppressed I was constantly afraid of having an organ failure, cancer, or an infection that I couldn’t recover from. This caused severe depression and anxiety because I always had this fear I would die from Lupus. I handled it by not addressing it, suppressing it and pretending everything was okay. Eventually this drove me to stay in a deep, dark depression. God gave me the strength to climb out of this great darkness and despair. Through Him I was able to battle my denial and anger.
Most of the time now I am in the acceptance stage. I know that God is in control of my life which enables me to be in control of my disease. I try to be intentional everyday about everything that goes into my body from food, to medication, supplements and even all products and household items that I use. With my doctors I have taken ownership of my disease. I learn everything I can and never start anything new without careful consideration, research and prayer. I accept my life has changed.
Occasionally I still grieve over the life I have lost, the things I am unable to do and the person I thought I once was. The truth is, I am still me, I am just a different version of me. I have learned through God that having Lupus is not a reason to become a bitter person. In some ways, since I changed my spiritual life and the way I thought of my disease, my quality of life has improved. Yes Lupus has really taught me what I am made from and where I draw my strength from. In some ways I am happier now in my forties than in any other stage of my life. I don’t just wake up everyday instead I realize everyday is a new beginning, a gift and a new chance to truly live. I know now that just because I have Lupus, it’s not all about me. I have a chance every day to make someone else’s life better. It was why I started this blog. I hope my stories, my failures and my triumphs will make someone else’s journey a little easier.
Good has come from what I once believed to be tragedy. I see it everyday in the person that I have become. I have an inner joy that comes from knowing that God is continually in control of my life. I recognize the blessings from the disappointments, like spending time with my children since I can no longer work. The need to spend so much time managing my health has given me the opportunity to work at discovering who I am. Lupus was a giant weight that I thought I needed to bear myself. My blessing came when I learned to lean on my friend, Jesus Christ and let him bear the load. I know I would not have gotten to this place had I taken a different path. God has chosen this path for me and He is there walking beside me or carrying me. My hope is through Him I can make a difference in the world, no matter how small, as long as He chooses for me to be here. I am committed to find joy in all aspects of life. I know joy is not always being happy, but it is felt deep inside, and never goes away because of our circumstances, tragedies, or frustrations. It allows us to handle things differently because we are filled with the love, joy and grace of God.
