15 months ago I was diagnosed with SLE Lupus. Until then, several doctors had me believing that I was crazy, depressed, stressed, or just a complainer. I knew it was more. Being a wife, mother of three, a (young) grandmother, teacher, coach, and having a type A personality had me in overdrive most of the time and I liked my hectic life. Over several years I began to have all the classic symptoms of Lupus but not one doctor even considered it as a diagnosis. Instead, they began the ripping out of my organs. It started with a hysterectomy and ended with a thyroidectomy, but I still didn't feel better, I got worse! It wasn't until a physician's assistant decided to prove that I was just stressed out by running a few MORE test and when they came back with a positive ANA I was referred to a rheumatologist and suddenly (if you call over 2 years suddenly) I had a diagnosis. To tell you the truth, I was relieved! I imagined some miracle pill that would take the pain, fatigue, blisters, mental confusion, heat intolerance, etc. away and I could return to my daily schedule. Not so! 15 months later, I've given up teaching and every other activity that I considered normal. Now my days consist of reacting to my body's whims. Every day is different, but most are difficult. My doctors are still playing with medications and running more test. I now have a total of 6 doctors in my life. I see them more than I see my friends or family. I've searched the Internet for information and hope that someone, somewhere knows how to kick this in the butt. I have found limited information, most of it obscure and antiquated. I've read books, blogs, personal stories, and every piece of information from the Lupus experts. I found one expert who said that it has been 40 years since a medication was approved for Lupus treatment. I'm on 6 medications...are they just guessing...am I a lab rat? I wouldn't mind being a lab rat if they told me anything promising about a cure or even a way to feel normal again. Instead, here I sit at 9:00 am, unable to start my day because of joint pain.
I am often bombarded by my well-meaning friends who send me email forwards with suggestions of thinking positive or chain wellness prayers. My body has withered to such a point that I HATE to reunite with people who haven't seen me in over a year. Where most people gain weight from the steroids and meds, I have lost weight. I am 5'5" and only weigh 95 pounds. I am often told that I just need to eat a hamburger and go outside and get some sun and exercise so I will feel better. I wish it was that easy. I would eat 10 hamburgers, stay in the sun, and run a marathon, but those of you reading this know how quickly my disease would flare and the viscous cycle this would cause.
A low point in this disease came the Saturday before Easter. My oldest son is separating from the military and my husband was out of state helping him load the moving truck and drive it home. My daughter and son-in-law and their two children, my daughter-in-law and her newborn, my parents, and my sister came to my house to celebrate Easter. I love family celebrations. I love to cook. I love to chase my grand kids. I put on my "I can do this" face and tried to participate. I barely threw together a chicken spaghetti casserole and prayed that my make-up was working overtime. After two hours, I was exhausted and hid in the bathroom to dry my tears only to reemerge for another failed try. My family realized that I was struggling and left much earlier than any holiday celebration, just in time for me to have a major meltdown in front of my daughter-in-law. I barely moved around!!! I cooked one dish!!!! I'm 47!!! This is ridiculous!!! Today is Wednesday and I'm still exhausted, sore, and sad. I know it is hard for my family to understand because I have been the entertainer for over 25 years, but I just can't do it anymore. I want to, I just can't. The problem is I don't look sick, I look anorexic. People don't understand that my body is waging a war against itself and I am caught in the middle.
I don't want to think that there are others out there who are going through what I am, but I know you are out there. Talk to me. Tell me how you push through.
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