Life is a struggle. For all of us. Every single day.
I almost posted to Facebook yesterday that it was one year to the date that I was diagnosed with Mixed Connective Tissue Disorder (MCTD), which is something that I struggle with every day.. But the more I thought about it, the more I decided not to talk about it...not on that one year mark. I'll explain why in a moment.
It's difficult for someone like me who happens to remember the dates of just about everything that ever happened in my past. Drives my husband Joel crazy. He knows all the "anniversaries" of past events that I remember and, bless him, he keeps them in a Google calendar so he can always empathize, sympathize, or celebrate each of them with me since he could never remember them all on his own. I don't live in the past, but where I've been and all I've been through help define who I am now. Some memories are wonderful, some...not so much. Sometimes it's simply a measure of how far I've come or that I've finally let go of something that has been holding me back. Remembering where you've been is important in realizing where you are now, and also looking forward to where you're going.
I was devastated last summer when I went to my doctor, thinking my lack of energy and constant achy muscles could be addressed with some thyroid meds and a frank reminder of my age (I have one of those milestone birthdays coming up in a few days). Instead, my sweet doctor (and despite the fact that I absolutely hate going to the doctor...any doctor) went through the results of my blood work with me one page at a time. "Your cholesterol is excellent, you have no signs of heart disease, liver and kidneys look good, your glucose is perfect. These pages of your blood work are worthy of a picture frame."
So I sat there thinking, "then why do I feel so horrible all the time?" I had begun to think it was all in my imagination. Or that maybe everyone else was just growing older more gracefully than I was.
And then she came to the very last page. I should have known something was up when they had taken so many vials of blood, but I trust my physician and her acute sense of people's problems, not to mention her awesome women's intuition, so I was sure she had my best interests at heart. And she did, I just didn't like the results.
"And then there's this."
She handed me the last page which bore the results of a test I was certain no doctor had ever ran on me. It was an Antinuclear Antibody (ANA) test. And it was positive. When you have an autoimmune disorder, your immune system mistakes healthy cells for intruders and attacks them. I blanked out for a moment because I'm a bit prone to panic. That's one of the reasons I love Joel so much - he knows that, and always offers to go to the doctor with me if I want him to. I remember hearing words, but I mentally sort of shut down for a minute while she continued to talk. When I came back around, I still saw her there in front of me, telling me that it would be okay. It didn't really hit me until I got home and read more about MCTD just what she had said. Of all the years I had suspected problems beyond what any doctor wanted to help me find out about myself, she was finally the one who rescued me. No, I didn't like what she said, but she did rescue me because she finally gave me an answer. An answer to all my years of questions about so many physical problems I'd had. And it doesn't sound like a big deal, but when you have doctors turn you away and tell you that "you're overreacting" or "there's nothing wrong with you" it tends to break you down over time.
So I did exactly what Joel often tells me not to do...I started researching on the internet. The web is a wonderful thing...at times. But Joel will be the first to tell you that it isn't always the best place to go. And he has a Ph.D. in computer science. I read and read and read, but at least I had an answer this time. It wasn't like I was trying to diagnose myself like I'd been trying to do for years because no doctor had been able to. I had an explanation, and honestly, it was rather liberating. After years of wondering, I could finally address it head on. I could learn what to do and what not to do. I could learn which foods were good for me and which foods aggravated my condition. I didn't have to worry and wonder anymore, just learn. Many people aren't familiar with MCTD, so if you aren't bored out of your mind by now, I'll tell you a little about it.
It's actually more of an overlap disease because it contains signs and symptoms of a
combination of disorders — mainly lupus, scleroderma and
polymyositis. The symptoms of the separate
diseases usually happen over several years' time and don't appear all at once, often making diagnosis complicated In later stages, the lungs, heart and kidneys
may be affected or possibly fail, so my doctor keeps constant watch on my organs. There is fatigue, fever, Raynaud's phenomenon where fingers feel cold or numb, swollen hands, and, the worst for me, muscle and joint pain. There is no known risk factor, no known cause, and unfortunately, no cure. But, now that we know, we can keep a watch on my organs and manage any other medications that can help keep me healthy. Many people with MCTD often suffer from depression because of their aches and pains and inability to do what they want and need to do. And that's why I chose not to mention all this yesterday.
When the news of Robin Williams' death came out, so many people thought they had all the answers. Some even condemned him for taking his own life. The truth is, unless you've ever experienced those feelings, you have no idea what it's like. I've never wanted to take my own life, but I've always been an anxious sort of person, and panicky, and sometimes easily depressed. And it is easy to be down about a condition like this, but I realized yesterday that I'm very fortunate. I have a doctor who took all my questions and finally, FINALLY, turned them into answers. And she makes sure that I have whatever I need to live a healthy life to the best of my ability without suffering more than necessary. MCTD is sometimes referred to as one of the "invisible diseases." People who have it don't look like they're sick, so I might look okay on the outside, and really feel sore and miserable inside. But I have a physician and a family that watch out for me, and help care for me. I have help for a disease that does depress me, but I'm living a good life. I'm finally living out my dream of writing, and other than days when my fingers are too tired to keep up with the ideas rapidly running through my head, I can type without much pain.
So rather than look at yesterday as the big one year mark since my diagnosis and feel burdened, I chose to be happy. Thankfully, deep down, I am a naturally happen person, despite all I've been through and all that I am still going through. At least now I have answers. I have a wonderful doctor. I have a loving family, gracious and caring friends, and readers who enjoy my work. It's not always easy to see things that way, but when you notice someone else who could no longer deal with the sadness that life often brings, it makes you appreciate all the good that we often miss. I couldn't make it if it weren't for all the love I feel from those around me.
Life is a struggle. For all of us. Every single day. Take the time to give a hug, or a compliment, or a kind word, or even a pat on the back to someone near you. We all need it, we all want it. And you never know when that kindness might just be the thing that keeps someone from doing the unthinkable.
