Deena BinghamMy first post is going to be an honest, heartfelt one because I feel I should start this blog on the right foot and exactly were I am today! My true self and my honest journey! I have struggled and procrastinated for weeks with this first post because I didn’t know what to say. I didn’t know where to begin because right now physically and emotionally I am not in a good place. Then I realized that I need to write about that! If I am going to help others begin their journey to a better life I must be honest! I have to share all of me. My triumphs and my struggles. I realized that even during this time I am ahead, I have triumphed and I have dusted myself off and began again after each and every flare. I have spent years fine tuning my health and mental outlook. I have acquired a lot of coping skills, knowledge and an attitude that I believe can help others during their own journey or help them to begin one.
That being said I started this site to be an encouragement to others because over the last few years I have been on a long emotional, trying, satisfying and joyful at times journey towards physical and emotional health and have had a lot of epiphany and aha moments. I hear a lot from others about how well I look and what an inspiration I am because of how I respond to having a chronic disease. But you see I don’t feel like an inspiration today. I have days and even weeks that I let the disease take over. It is during these times that, because I am human, I have my own little “woe is me” party of one. I should say party of four because it not only affects me but my wonderful, supportive husband and my children (the ones still at home) as well. It is during these times that I must admit that I want to give up and cry out to God wondering, why me Lord? Why do I have to have Lupus? Why do I have to wake up every day and wonder if I can possibly get out of bed in pain and always feeling tired one more day? Why do I always have to always worry about getting an infection, especially one that could be serious? How can I be a good mother, wife, Christian and friend today when I feel like this? How can I keep a smile publicly one more time to signify to people that everything is fine, when it’s not? Because when I don’t smile I unnecessarily feel like a hypochondriac or think, I don’t want to tell people how I really feel because quite frankly how many years and times can I tell people that I am not well today? The whole time wondering if they are thinking, oh Deena’s sick again and have them change the subject or think “she doesn’t look sick”. Please don’t get me wrong. I am not being mean or ungrateful. I truly appreciate the thoughtfulness and prayers of others. And most people probably don’t think those thoughts at all! But I think I am my own worst enemy and critic! Anyone with a chronic disease can attest to the fact that after awhile it is just easier to respond with a smile and say “I’m doing great”!
Please bear with me as I try to weave a short story of my journey to this point and I promise it will be the short version! I feel this is important because for me to be able to be a voice of hope and encouragment now, you must know where I began. I am sure some of what I say will resonate with some of you.
I have always been sick in some way or another. I was born at 28 weeks and my parents were told that I wouldn’t make it through the night. Well, apparently I did and I haven’t stopped fighting since :-). My mom always telling me that they could still carry me on a pillow at three months when I was allowed to go home. My lungs not being fully formed at birth and being born that young caused a lot of bronchitis and illness when I was young. Even through high school looking back I don’t think I ever really felt well. Into my twenties I always seemed to be sick and feel tired. I started to think of myself as lazy. I felt like a hypochondriac and even had some doctors question my mental health. Even though at 25 I had a doctor tell me my ANA levels were high and if I ever started to have achy joints then go see a rheumatologist. Lots of missed work because I simply did not feel well. Both of my pregnancies I was extremely ill and even though it was hard I feel very blessed to be able to have had my children, one using fertility treatment. I was told that I would not be able to have children at a young age. Thankfully I gave birth to two beautiful girls and God sent me another boy and a girl that I did not birth but are in every way my son and daughter. This trend of always feel tired and sick continued into my thirties. I went from being a professional and climbing the corporate ladder, working as a Project Manager, Owning and running my own business, serving on boards and being a productive member of my church and community to just trying to figure out why I never felt well and was always sick. That being said a silver lining in all of this is I got to spend more time with my children than I ever would have if I stayed working! But forgive me, I digress :-). Eventually (which is another longer story), I was diagnosed with Lupus. I didn’t feel at the time that my primary care physician felt the I should see a rheumatologist but I insisted on this referral. Please, you know your body, if your doctor will not listen to you then you need to find a new doctor. I cannot stress this enough! Eventually I ended up with Aseptic Meningtis in 2009 and spent almost 3 weeks in the hospital. This eventually led to a diagnosis of Lupus after ten hospitalizations or so later. Six years and multiple hospitalizations, the final conclusion is that I have CNS Lupus or Meningitis Lupus. Most of what is affected is my Central Nervous System. My point in telling you all this is so that you don’t feel alone, that you don’t feel like your symptoms are all in your head. Our healthcare system is a bit broke I think when it comes to listening to patients and those patients knowing their own bodies. I am extremely thankful at this point that I have wonderful doctors and nurses that communicate with each other and work as a team. Keep in mind though that you are part of this team. Share your thoughts, changes in your body and symptoms and most of all don’t expect your doctors to be miracle workers. I used to feel bad about calling my doctor and telling her what was wrong, I felt I was bothering them, I felt guilty, but they are there to work with you! Take care of yourself, eat right and seek a healthier lifestyle. Medicine is not a cure all. Your health, eating, daily habits and mental outlook all play a significant part in your disease. Find a balance between supplements and chemical medication. I am immuno suppressed, I have a port and receive monthly infusions (medications will be another post :-), but I also try to exercise daily (another post :-), eat right, take supplements that my body needs and try to get enough rest. It took me years to figure all of this out. Eventually I got to the point that I truly felt I was going to die if I did not adopt an almost fanatical lifestyle. It okay to be a fanatic about your health and your life! It’s the only life you are going to get.
Whew! Above has been my very broad and long first post! I promise that the rest will probably be a bit shorter. Writing this first one though has been very therapeutic for me. As I mentioned above I have been feeling very down on myself because for weeks now I having been flaring and even though I haven’t ended up in the hospital, it has now officially been one year since I’ve been hospitalized, it has been a struggle to keep a positive attitude. I also had surgery last week to remove my port and put in a new one and I have not been in a good place but my reason for telling you this is I have been here before! I used to think that it was discouraging to constantly having to start over every time I flare, but my thought process has changed, I am now thankful that I can start over because it is better than the alternative, I am thankful that each time I flare and have to go from walking 5 miles to 1000 feet again the time it takes to do that gets shorter and shorter because overall I am learning how to control my health, mental and physical.
Please pardon the rambling, run on sentences and grammatical errors and overlooking the fact I am a novice writer! Please comment or if you need to talk, send me a message on my contact page and thank you again for letting me be a small part of your life and I hope I have given you some encouragement today in knowing you do not fight this battle alone. God Bless you all and I will talk to you again soon. Deena 🙂
